Now that the state budget has been adopted, the Harlem United policy team has turned its attention to state legislative issues. Leveraging our agency’s leadership and track record as well as working in coalition, we promote good bills for PLWHA and affected communities and/or push back against bad legislation.  Here are four Harlem United priorities for the 2013 state legislative session, which will end June 20^th.

“The Gender Expression Non-Discrimination Act” (GENDA)

InNew YorkState, it is still legal to discriminate against people because of their gender expression or identity. This discrimination is perpetrated in places of employment, education, housing, and public accommodations such as banks, bus stations, dentist offices, hospitals, funeral parlors, libraries, hotels, restaurants, and more. Over half of transgender New Yorkers have reported being verbally or physically harassed in public accommodations, which means that thousands of New Yorkers are being persecuted, intimidated, or discriminated against and can be fired, evicted or refused service because of their gender identity.

Harlem United stands with its allies in support of A.4226 (Gottfried)/S.195 (Squadron) or "The Gender Expression Non-Discrimination Act" (GENDA). This legislation adds "gender identity or expression" toNew YorkState's existing nondiscrimination and hate crimes laws.

Passing the Gender Expression Nondiscrimination Act (GENDA) inNew YorkStateis the first step toward ending the discrimination that transgender and gender non-conforming people still face.   Sixteen states and theDistrict of Columbia, as well as over 125 cities in theUS, have already passed transgender-inclusive nondiscrimination legislation. While state legislation will provide comprehensive protection, some cities in NYS already have passed legislation, includingAlbany,Syracuse,Binghamton,Buffalo,Ithaca,New YorkandRochester, as well as Westchester,SuffolkandTompkinsCounties.

Even though the New York State Assembly supported the bill in 2008, 2009, 2010, 2011, 2012 and 2013 the New York State Senate Republican Leadership has refused to bring GENDA to a full vote, despite the fact that the legislation will not cost taxpayers a single dime.  

The Senate’s stand-still position has resulted in unchecked discrimination acrossNew York, and it is time that The Empire State put an end to legal discrimination against transgender people.

“No Condoms as Evidence”

This important law – referred to as No Condoms as Evidence, S1379/A2305 – if enacted would stop police and prosecutors from using possession of condoms as evidence of prostitution. Currently, police and courts can use the fact that a person has, or is carrying, condoms to prove that they are engaging in criminal activity. Sex workers report that they are more likely to be arrested if they carry condoms. Police officers regularly confiscate condoms from people they allege are engaged in prostitution to use as evidence against them at trial. As a result people are hesitant to carry condoms to protect themselves and others; for fear that it will lead to arrest or be held against them in court.

By allowing the possession of condoms to be used as evidence of prostitution and related offenses, the current law underminesNew York’s efforts to combat sexually-transmitted infections and diseases and to educate the public about safer sex. Harlem United believesNew YorkStategovernment should promote, not discourage, the use of condoms and other public health tools. As an effective tool for preventing unwanted pregnancy and the transmission of STIs and HIV, condoms should be widely accessible. Sound public health policy would encourage condom use by eliminating the fear that carrying a condom will be used against you by police or in a court of law.

This legislation is important to protect safer sex choices in general, and to prevent those in the sex trade in particular from being penalized for being prepared to use protection against STIs, pregnancy and HIV.  This bill is a no-brainer. Let’s get it done this year!  

HCV Testing Bill

The New York State legislature is considering landmark legislation that would require clinics and hospitals to offer hepatitis C testing to all people born from 1945 through 1965 — “baby boomers” — in accordance with new CDC guidelines.  Baby boomers make up the majority of people with chronic hepatitis C, but most remain undiagnosed.New YorkStatecan lead the nation in responding to the hepatitis C epidemic.

This bill – A01286(Zebrowski)/S02750 (Hannon) would amend New York’s Public Health Law by adding a new section 2171 to offer hepatitis C related testing to every individual born between those years who receives health services as in patient or in the emergency department of a general hospital.  Assemblyman Kenneth Zebrowski is the original sponsor of the Assembly bill. His father, a former NYS Assemblyman – died in 2007 from complications from hepatitis C.

Some others at high risk include: those who’ve ever injected illegal drugs (including those who injected once or a few times many years ago), people who had blood transfusions, blood products or organ donations before June 1992, persons who received clotting made before 1987, people with high-risk sexual behavior, people who snort cocaine using shared equipment, people who have shared toothbrushes, razors and other personal items with a family member who is HCV infected.   Approximately 20 percent of persons exposed to the virus develop symptoms. After the initial infection, 15-25 percent will recover and 75 to 85 percent will become chronically infected (life-long infection). Approximately 70 percent of persons chronically infected may develop liver disease, sometimes decades after initial infection. The good news: HCV can be treated and cured. Treatment decisions are complex and are best made with a physician. [1]

The Centers for Disease Control and Prevention (CDC) now recommends a one-time testing of all Baby Boomers for hepatitis C. New York Cityis the epicenter of the hepatitis C epidemic, with nearly 200,000 residents chronically infected – more than any other city in the United States. Since 2007, hepatitis C-related deaths now surpass annual AIDS mortality, accounting for at least 15,000 deaths nationwide each year according to CDC.   Screening all baby boomers could be one of many ways to stem the epidemic in the greater New York Citymetro area (including Long Island) and across New YorkState.    

30% Rent Cap

This bill, currently sponsored by Senator Hoylman (who won Senator Tom Duane’s seat), would create an affordable housing protection for about 10,000 permanently disabled, low-income New Yorkers living with HIV and AIDS who receive public rental assistance and who are at risk of becoming homeless. Further, the change in law will help achieve saving goals of redesigning Medicaid inNew YorkStatein the long tern.

Unlike every other comparable housing assistance program for low-income New Yorkers, the HIV/AIDS rental assistance program does not cap the tenant’s rent contribution at 30 percent of their income.  Instead, tenants in the program are required to spend a large portion of their disability income towards rent.  For tenants who receive SSDI, SSI or Veteran’s Benefits, this can represent between 50-85 percent of their monthly fixed income for rent.

This forces tenants to make difficult trade-offs between essential needs in order to pay their rent, which can lead to people skipping doctor’s appointments, medicine or groceries. In 2010, the 30 Percent Rent Cap bill passed both houses of the state legislature, but then-GovernorPatersonvetoed it. The governor had promised to sign the bill on two occasions, but reversed his decision, thanks in part to pressure from New York City Mayor Bloomberg.

New Yorkshould continue building on its proud tradition of fighting the epidemic and working to ensure all our state’s residents can afford their homes. Urge the NYS Legislature and Governor to pass the bill this year!

TAKE ACTION!

• ·        Tell the New York Senate to bring GENDA to a vote in 2013.  Sign and share, and follow the progress at passgendanow.org.
  • Governor Andrew M. Cuomo – (518) 474-8390 or gov.cuomo@chamber.state.ny.us
  • Speaker Sheldon Silver – (518) 455-3791 or speaker@assembly.state.ny.us
  • Assemblymember Richard Gottfried, Health Committee Chair – (518) 455-4941 or GottfriedR@assembly.state.ny.us
  • Senate Majority Coalition Leader Dean Skelos – (518) 455-3171 or  skelos@nysenate.gov
  • Senate Majority Coalition Leader Jeff Klein – (518) 455-3595 or  jdklein@senate.state.ny.us
  • Senator Kemp Hannon, Health Committee Chair – (518) 455-2200 or hannon@nysenate.gov

• Please call the Finance Committee Chair, Senator John DeFrancisco, at (518) 455-3511 and ask that he immediately put the Hep C Senate Bill 2750 on the Senate Finance committee calendar for a vote.
• Call the following leadership to demand that they make No Condoms as Evidence and 30% Rent Cap a legislative priority!

For more information or to ask a question, feel free to contact Kimberleigh J. Smith at ksmith@harlemunited.org

Did you know that it is still legal to discriminate against people because of their gender expression or identity? This discrimination is perpetrated in places of employment, education, housing, and public accommodations such as banks, bus stations, dentist offices, hospitals, funeral parlors, libraries, hotels, restaurants, and more. Over half of transgender New Yorkers have reported being verbally or physically harassed in public accommodations, which means that thousands of New Yorkers are being persecuted, intimidated, or discriminated against and can be fired, evicted or refused service because of their gender identity.

Harlem United stands with its allies at Housing Works and other community organizations to support A.4226 (Gottfried)/S.195 (Squadron), "The Gender Expression Non-Discrimination Act" (GENDA). This legislation adds "gender identity or expression" toNew YorkState's existing nondiscrimination and hate crimes laws.

Transgender people are more likely to face discrimination in housing, employment, public accommodations, and many other areas of life. This discrimination can have an especially dangerous effect on transgender New Yorkers who are living with HIV and need educational and vocational opportunities to support their overall well-being.

New YorkStatehas fallen behind on its commitment to fair and equitable treatment. Sixteen states and theDistrict of Columbia, as well as over 125 cities in theUS, have already passed transgender-inclusive nondiscrimination legislation. These cities in New York State include Albany, Syracuse, Binghamton, Buffalo, Ithaca, New York and Rochester, as well as Westchester, Suffolk and Tompkins Counties.

Passing the Gender Expression Nondiscrimination Act (GENDA) inNew YorkStateis the first step toward ending the discrimination that transgender and gender non-conforming people still face.  GENDA is sponsored by NY State Senator Daniel Squadron and NY Assemblymember Richard Gottfried.

While the New York State Assembly has supported the bill in 2008, 2009, 2010, 2011, 2012 and 2013 the New York State Senate Republican Leadership has refused to bring GENDA to a full vote, despite not costing taxpayers a single dime.  

The Senate’s stand-still position has resulted in unchecked discrimination acrossNew York, and it is time that The Empire State put an end to legal discrimination against transgender people.

Tell the New York Senate to bring GENDA to a vote in 2013 to usher in an era of true statewide equality.  Please sign and share, and follow our progress at passgendanow.org.

STAY TUNED FOR MORE ACTIONS YOU CAN TAKE TO SUPPORT HARLEM UNITED’S LEGISLATIVE AGENDA

Sequestration Will Hurt Our Communities:

Call Congress!

Under the American Taxpayer Relief Act of 2012, the “sequester”- an arbitrary across the board cut to most programs in government - was delayed for two months, setting the new deadline for March 1, right before the March 27^th expiration of the Continuing Resolution (CR), which is currently funding the government.  This is not a good scenario. Even with President Obama warning of the short-sightedness of such drastic deficit cutting measures during his recent State of the Union address, averting the sequester again may prove difficult.

One More Week! Send our New York Congressional Delegation a Message

The National Association of Community Health Centers has set up a toll free Advocacy Hotline

Call 1-866-456-3949 TODAY

Enter 10027 or your own zip code to be connected to Senators Schumer and Gillibrand,

Congressman Rangel and/or your own Congress person

Urge them all to delay or replace the sequester as soon as possible and remind them that if they fail the funding cuts that will go into effect could have an immediate impact on Health and AIDS Service Centers’ ability to serve theirpatients and communities.

What’s At Stake for Community Health and People Living with HIV?

If Congress does not act to delay or replace the "sequester” by March 1st, then Community Health Centers , like Harlem United’s federally-qualified health center, face a potential loss of $115 million in funding, which translates into approximately 900,000 fewer patients served, including some currentpatients and potential newpatients. Virtually all existing health centers could expect to see some impact on their federal health center grants if sequester were to go through.

The impact of the sequester on health centers and people living with HIV will be significant. According to the Office of Management and Budget (OMB), under the original sequester, health centers were facing a combined $167 million funding reduction. However, the two month delay and extra funding sources will result in change to the across the board sequester cuts for programs that had already been subject to sequester, including the Health Centers program.   The Center on Budget and Policy Priorities (CBPP), estimates that now health center discretionary funding would be subject to a 5.1% cut.

With just a week before the March 1st deadline, little action has occurred on the Hill to avert the sequester.  Advocates, including many of our allies, are increasingly concerned that despite warnings of the negative economic impact, the sequester will go through this time because Congress may be unwilling to strike a deal.

Two national AIDS advocacy organizations, amfAR and NMAC, have calculated the estimates of the human impact of budget sequestration on the response to the domestic HIV epidemic, reflecting these same potential cuts.

As a result of sequestration:

• 9,750 Americans living with HIV or AIDS will lose access to the AIDS Drug Assistance Program (ADAP), which provides life-saving medication to low-income PLWHA. Recent research has shown that, in addition to saving and improving the lives of PLWHA, HIV treatment reduces the risk of transmitting HIV to an uninfected partner by 96 percent. 

• More than 6,500 people of color would lose access to ADAP services. 

• Under the Housing Opportunities for Persons with AIDS Program (HOPWA), which provides housing and supportive assistance to PLWHA who are unable to afford housing,  1,300 fewer households would receive permanent housing and 1,800 fewer households would receive short-term assistance to prevent homelessness. Research demonstrates a direct relationship between improved housing status and reduced HIV risk behaviors.  

• 1,850 households that include at least one person of color would lose HOPWA housing services; 560 households that include at least one Hispanic person would lose housing services.  

• The National Institutes of Health (NIH), which has been at the forefront of AIDS research for 30 years, would lose $157 million in AIDS research funding. 290 AIDS research grants would go unfunded, including 30 specifically funding AIDS vaccine research. It is estimated that AIDS research funded by the NIH has led to a gain of more than 14.4 million life-years globally since 1995. 

• Over $40 million would be cut from state and local HIV prevention efforts funded by the Centers for Disease Control and Prevention (CDC), including efforts targeting young people and adults at high risk of infection. Among other programs, prevention efforts support testing to help identify the 18 percent of Americans living with HIV who do not know they are infected. 

• The Ryan White HIV/AIDS Program, which provides care to low income people with the HIV, stands to lose $196 million.

It is imperative that we continue fight to stop sequestration.  

On Tuesday, December 18^th Harlem United Community AIDS Center, joined by more than 50 advocates, providers, researchers and people living with HIV and AIDS, convened Adding PrEP to the HIV Prevention Toolkit: Affecting Change for MSM of Color and Transgender Individuals.

The forum was convened at the Schomburg Center for Research in Black Culture to discuss local, on-the-ground PrEP implementation issues in light of the FDA’s approval of Truvada as PrEP over the summer. 

Steven Bussey, CEO of Harlem United, delivered greetings. Mitchell Warren, Executive Director of AVAC, set the stage with “A New Prevention Tool for the Toolkit: The Need and Power of PrEP.” Mr. Warren reviewed the research and potential efficacy of PrEP and submitted a few potential policy questions and implications, such as supporting a comprehensive prevention strategy to complement PrEP, monitoring and impacting Gilead’s Risk Evaluation and Mitigation Strategy, securing funding for demonstration projects and ensuring patient protections.

The next three presenters addressed “Prepping for PrEP: Payors & Practicalities.” Dr. Monica Sweeney, with the NYC Department of Mental Health & Hygiene; Dr. Charles Gonzalez with the New York State Department of Health and Dr. Rafael Rivero from Gilead Sciences each lent a perspective and substantive expertise on the opportunities and challenges PrEP presents. These include access issues, private and public insurance coverage and ongoing work with behavioral scientists. Dr. Rivero also discussed Gilead’s own Patient Assistance Program.

Finally, Dr. L. Jeannine Bookhardt-Murray, Harlem United’s Chief Medical Officer, wrapped it up with “PrEP in Action and on the Ground: Clinical Opportunities and Concerns.” Dr. Bookhardt’s remarks sparked a provocative debate about the messages surrounding PrEP and the need to leverage PrEP and elevate the conversations about comprehensive prevention and sexual health. 

Below are the presentations.

Pre-Exposure Prophylaxis

New York State Approach to PrEP

A New Prevention Tool for the Toolkit

Free Fall Averted for Now

Early in the morning of New Year’s Day, the United States Senate passed HR 8 "American Taxpayer Relief Act of 2012" by a vote of 89 – 8, with three Senators not voting. Later that night the House of Representatives passed the bill without amendments by a vote of 257 – 167. President Obama signed the legislation on January 2. The passage of this legislation effectively averts the so-called fiscal cliff … for now.

Here are a few highlights:

• HR 8 permanently extended reduced tax rates and benefits enacted in 2001 and 2003 for most Americans. This means the Bush-era tax rates become permanent. The bill increased taxes on individuals earning more than $400,000 and couples earning more than $450,000. The Congressional Budget Office has estimated this change will bring $600 billion of revenue over the next 10 years.
• HR 8 also postponed the cuts from sequestration by two months. Many of these proposed cuts impact healthcare, housing and HIV services and programs. According to Congressional Quarterly the cost for the two month delay was $24 billion, this was paid for with $12 billion in revenue from retirement accounts and $12 billion in cuts to the budget cap for FY 2013 and FY 2014.
• HR 8 also again extended the scheduled 27% reduction in Medicare doctor payments for one year. As we look to implementation of the Affordable Care Act it was important to avert that cut and possible loss of doctors who would agree to see Medicare patients.

The agreement, however, is a stopgap, bare bones measure that leaves most of the larger issues of deficit reduction and responding to long-term budget reform unresolved. “One way to look at the agreement is as the end of Act II of a continuing drama, with Act I being the Budget Control Act of 2011,” remarked our policy allies at AIDS United in their most recent Policy Update.  “There are one or more acts to be played out …These next stages will focus on increasing the debt ceiling, the still pending automatic spending cuts (sequestration), and completing the appropriations process for the current 2013 fiscal year.”  

The agreement raises very important concerns going forward for those of us in the HIV, AIDS and broader health communities as well as others concerned about social and economic justice. The concerns will require us to remain very vigilant over the next 90 days.

The central theme of the concerns is that some provisions of the fiscal agreement and its stopgap approach will create tremendous pressure to reduce spending for non-defense discretionary (NDD) programs and entitlement programs, including Medicaid and Medicare. The Republican leadership in both the Senate and the House of Representatives has made it very clear that they view the next stages as being all about deep spending cuts and drastic changes to Medicaid, Medicare, and other safety net entitlement programs for low-income people.

The President has made forceful statements that the next stages must be balanced with additional revenue as well as spending cuts, without harming entitlement programs. He has noted that the fiscal cliff agreement provision that delays sequestration to March 1 was paid for dollar for dollar with revenue and spending cuts. He sees that as a precedent for moving forward. He has indicated also that he will not negotiate spending cuts in exchange for an increase in the debt ceiling.

The upcoming battles will be very important. Funding for the Ryan White Program, HIV prevention, AIDS housing, and implementation of the Affordable Care Act cannot be sacrificed. “Entitlement reform” must not equal the dismantling of the safety net for low-income and other vulnerable populations.

Working with our national partners, Harlem United will be fully engaged in protecting programs to end the HIV and AIDS epidemics, achieving meaningful health care reform, and preserving the social and economic safety net.

Fun Facts about the 113^th Congress

On January 3, 2013, the 113^th Congress convened for the first time and welcomed 95 new members into its ranks. Although the November elections did not significantly change the balance of power, the makeup of the 113^th Congress is much different from any of its predecessors.

There are now 20 female Senators, many of which are newly elected. In fact, New Hampshireis the first state to send only women to both chambers of Congress.  In addition, the 113^th Congress has among its ranks 41 African-Americans, 36 Hispanics, 10 Asian Americans, and two Native Americans. Senator Tammy Baldwin (D-WI) is the first openly gay Senator, and Representative Kyrsten Sinema (D-AZ) is the first openly bisexual Member of Congress.

The 113th Congress will make decisions on many issues relevant to the HIV and AIDS community, including striking a deal on the sequester, the budget, and possibly the Ryan White CARE Act.

Please contact Kimberleigh J. Smith at ksmith@harlemunited.org with questions or requests for more information.

Information in this update has been compiled from the following sources: AIDS United Policy Update January 2013, the National Priorities Project and the New York Times January 1, 3 and 5^th 2013

Harlem United Votes!, our successful voter engagement initiative, yielded 141 registered voters including many first-time voters.

The Future of the Affordable Care Act

Health care reform emerged as a winner in the 2012 presidential election. If elected, Governor Romney vowed to repeal the Affordable Care Act (ACA), which aims to extend health coverage to millions of uninsured individuals beginning in 2014. President Obama’s re-election into office, coupled with Democratic control of the Senate, secures a future for the landmark health care law. The ACA is scheduled to move forward almost immediately, yet how the law is carried out will ultimately be determined by state lawmakers. The deadline for states to decide how they plan to develop health exchanges, which allow individuals and small businesses to shop for insurance coverage, has already been extended. State legislators also hold the power to decide whether to expand eligibility for Medicaid, a key component of the ACA’s vision of health reform.

Looming pressures to reduce the federal deficit continue to attribute to the difficulties underlying implementation of the ACA.  With the $600 billion “fiscal cliff” on the horizon - a succession of expiring tax breaks, federal spending cuts, and rise in the US debt ceiling – efforts to reduce federal health spending will likely be on the table.  As lawmakers continue to search for ways to cut federal spending, there exists possible pressure to scale back ACA’s subsidies that seek to help make insurance affordable for individuals with low income.  Stay tuned for a future Update on the “fiscal cliff.”

New York State Elections

Election Day proved to be a victory for New York Democrats, too!  Senator Kirsten Gillibrand in her first Senate election (she was appointed to the position following Hillary Clinton’s departure) won her seat easily; taking a large majority of the New Yorkers votes.  In the House of Representatives, three seats switched parties.   In Queens, Democrat Grace Meng became the first Asian-American to represent New York in Congress.  The New York State Assembly remained firmly in the control of Democrats.

The most dramatic election night news came out of the New York State Senate.  With some absentee and affidavit ballots still to be counted, control of the Senate could fall to either party.  The election results as of now show Democrats stealing away control from Republicans; holding 33 of the 63 Senate seats.  Republicans believe that they can take back at least one of those seats once the remaining ballots have been counted.  Regardless of the outcomes of the still too close to call elections, Democrats will likely hold a numerical majority in the Senate.  Divisions in the New York State Democratic Party could, however, keep the party from moving forward with key policy priorities.  NYS Elections officials could release the final results as early as Tuesday, December 4.

U.S. Preventive Services Task Force Recommends Routine HIV Testing

Last week the USPSTF posted a draft recommendation statement on screening for HIV. The recommendation applies to all people aged 15 to 65 and all pregnant women. Harlem United believes this represents a huge step forward in HIV testing and prevention efforts in the United States.

The USPSTF is an independent panel of experts charged with making evidence-based recommendations to the government regarding clinical preventive services. 

These recommendations take the form of grades assigned to a service, along with practice suggestions. The grade of “A” indicates that the USPSTF highly recommends the service as having a substantial net benefit to the patient, and advises practitioners to provide this service. In this decision, the USPSTF has recommended that routine HIV screening for all adolescents and adults ages 15 through 65 now be given a grade of “A”; a significant change from the former “C” grade. Previously, the USPSTF had only recommended HIV Testing for people who are at risk for HIV and pregnant women as a grade “A”.

Mid-Year City Budget Spares Supportive Housing

New York City released its mid-year financial plan on November 9^th, but the plan spares existing supportive housing contract cuts, good news for Harlem United and other HIV and AIDS supportive housing providers. Unfortunately, the plan does result in $1.7 billion in budget cuts to other programs: lay offs and attrition of city workers, cuts in afterschool slots, public libraries and school health centers, and increases in costs to school lunches.

Next year is another story; and it is likely that we will be fighting for restorations for HASA supportive housing and other programs again in 2013.

Please contact Kimberleigh J. Smith at ksmith@harlemunited.or with questions or requests for more information.

Gathered together in downtown Manhattan at the Federal Office Building, New York City Providers of Health Care for the Homeless (PHCH) celebrated National Health Care for the Homeless Day.  The event was an important opportunity for providers from all over the city to step back from their day to day work and celebrate those among them who go above and beyond in their service of homeless men, women and children.  The day highlighted the lifetime achievements of HCH providers and recognized one individual from each of the 12 agencies represented as a Health Center Hero or Shero.

Harlem United Hero: Eric Edwards

HU recognized Eric Edwards as the agency Hero for 2012.  Mr. Edwards has been a Dental Assistant with Harlem United for over eight years.  Mr. Edwards has bonded with clients enrolled in the ADHC program and has been able to help clients reduce their fear of being seen by a new dentist.  Mr. Edwards has even committed to educating clients about the importance of oral hygiene as part of the outreach team.

Compassion in Homeless Services Award

During the event, PHCH honored Philip W. Brickner, MD for his lifelong concern and care for the medical needs of homeless New Yorkers.  Jim O’Connell, MD, President of the Boston Health Care for the Homeless Program and well known doctor of street medicine, presented the award to Dr. Brickner.  Dr. O’Connell was just one of many people in attendance whose careers had been inspired and shaped by the work of Dr. Brickner.  In 1969, Dr. Brickner created one of the earliest community medicine programs in the country at St. Vincent’s Hospital in Manhattan.  The program was quickly recognized as a success.  Gaining national recognition and federal funding, Dr. Brickner’s model of providing health care for the homeless quickly spread.  Today, close to 240 programs based on Dr. Brickner’s model operate across the United States.

The conference proved to be both educational and enjoyable.  Providers and administrators learned of the importance of collaboration, while celebrating the tremendous work of their colleagues.  Much of the credit for the day goes to former HU Policy Intern, Whitney Buckholz.

Please, contact Andrew Leonard, aleonard@harlemunited.org with questions or requests for more information.

The International AIDS Conference was electrified by the notion that, together, we can create an “AIDS free generation,” and bring an “end to AIDS.”  These themes ran through almost every speech and presentation throughout the week.  The hope brought on by advances in prevention techniques and promising new medications has people feeling closer than ever to the end of the epidemic.  But what stands in the way of eradicating HIV/AIDS? And what can be done to overcome these barriers?  The conference marked a unique time in history when a strong, well-defined, and coordinated surge in the fight against AIDS could possibly lead to the elimination of the disease, but a relaxed attitude and lack of motivation could erase years and years of progress.

One issue that needs to be resolved first is how to define those themes of “an end to AIDS” and “an AIDS free generation.”  While these goals are inspiring, they need to be clearly understood by all stakeholders before money and resources are allocated.  An end to AIDS could mean either bringing the level of new HIV infections to zero or completely eliminating any biological presence of the virus.  When it comes to defining an AIDS free generation, the HIV/AIDS community will have to decide on which generation will be AIDS free.  Will it be the youngest generation of people alive now or will it be the grandchildren of that generation?

Several speakers at the conference highlighted the need to end homophobia and the stigma around HIV/AIDS.  In countries like Uganda and Senegal, the governments have criminalized same-sex practices.  Often when health workers attempt to deliver care to men who have sex with men (MSMs) in these countries, they are arrested and prosecuted for promoting homosexuality and gay rights.  The stigma that surrounds MSMs, particularly African-American MSMs, prevents many men from openly acknowledging their HIV status and seeking deeply needed care.  In the United States, black MSMs are 72 times more likely to be HIV positive than the general population. 

One of the most exciting new developments in HIV prevention is Pre-Exposure Prophylaxis (PrEP).  PrEP includes drugs like Truvada that a person must take daily to reduce their risk of becoming infected with HIV during sexual intercourse with a positive partner.  One clinical trial showed that when MSMs took Truvada and missed fewer than 10% of doses, they reduced their chance of being infected by 73%.  Though PrEP must be used in combination with behavioral interventions like condoms use, it offers new hope for reducing infections.  But some stakeholders are not so certain of the benefits of PrEP.  Some question the worth and morality of providing medications to uninfected people when so many people already infected with HIV in the US and across the world are unable to access the medications they need.  Truvada would also be expensive, costing nearly $13,000 for one person to receive the drug over the course of a year.  Other stakeholders fear that use of PrEP could lead to a false sense of immunity from the virus.  They worry that those taking the drug will engage in riskier behavior that could lead to infection even while on Truvada.

The hope for an end to HIV/AIDS goes beyond PrEP and the end of stigma.  Advances have been made in other fields that extend the hope of reducing new infections.  Newly emerging voluntary male circumcision programs have been known to reduce female-to-male transmission by 50 to 60 percent.  Developments in highly active antiretroviral therapies (HAART) have shown that treatment is prevention.  With these highly effective new drugs, patients can lower their viral load to undetectable levels, which reduces the risk of transmission.  Governments and public health programs are now seeking to place patients on HAART as soon after initial detection of the virus as possible.  Such a move could create a generation where many people live with HIV, but the virus never develops into AIDS.

Of course, all of these programs and strategies require significant financial resources.  Without a pledge to fully fund these innovative initiatives, progress could be halted and even reversed.  In the current climate of struggling global economies, many private and public funding sources have scaled back their commitment to fight HIV/AIDS.  Several speakers asked advocates and researchers to stay focused on the end goal of HIV/AIDS research; the development of a vaccine.  At a point of so much promise, the HIV community must strongly advocate for the continued dedication of money and energy that could lead to the end of AIDS in our time.

One of the conference’s most stirring speakers was Secretary of State Hillary Clinton.  In her remarks, Secretary Clinton outlined a renewed commitment to end AIDS.  Under her “blueprint” to end the global AIDS epidemic, the US will distribute $157 million through 5 funding streams:

• $80 million for treatment to prevent mother to child transmission
• $40 million to support South Africa’s voluntary male circumcision initiatives
• $15 million for research into effective interventions among high risk populations
• $20 million for a “challenge fund” to support country led plans to expand HIV services
• $2 million to be invested in the Robert Carr Civil Society Networks Fund to support civil society groups addressing key populations such as MSMs

There are no doubt significant obstacles in the struggle to end HIV/AIDS, but with innovative treatment and prevention programs, highly active new drug therapies and a renewed commitment to a commonly understood goal, the HIV/AIDS community has well founded hope that the suffering associated with this virus can come to an end in the years to come.

Please, contact Kimberleigh Smith, ksmith@harlemunited.org, or Andrew Leonard, aleonard@harlemunited.org with questions or requests for more information.

The XIX International AIDS Conference was held July 22 through 27^th, and Harlem United made a sizeable impact. The conference is organized and convened by the International AIDS Society every other year and draws more than 20,000 researchers, government officials, advocates, providers, activists, and people living with HIV and AIDS from all over the world.  It was held in Washington, DC after 22 years away from the United States in protest of the HIV travel ban, which was lifted in 2010 by President Obama.

This year’s theme was “Ending the Epidemic: Turning the Tide Together.”  With recent advances in HIV prevention and treatment, this year’s conference was full of optimism.  Stakeholders sought to bring an end to the epidemic as they discussed new drugs and strategies to battle HIV.  The ideas of an “AIDS-free generation” and “an end to AIDS” were popular themes that were repeated in most of the major plenary talks and discussions.  Scientists testified that with the correct combination of drugs and behavioral strategies, HIV infection rates could drop below epidemic levels.  Additionally, with increased prevention, the HIV community could stop the spread of the virus to future generations. 

But this air of optimism was sometimes stunted with skepticism by the reality of funding, stigma and the overall application of and access to effective interventions.  Much of the emphasis was on treatment as prevention, pre-exposure prophylaxis (or PrEP), combination prevention, linkage to and access to care, as well as stepping up efforts to stall the epidemic among men who have sex with men, sex workers, drug users and transgender populations.  The program book was as thick as an old New York City telephone book.

During the opening session of the conference, Phil Wilson, President and CEO of the Black AIDS Institute, who shared the stage with Secretary of State Hilary Clinton and Dr. Anthony Fauci, the famed NIH researcher, spoke about the domestic epidemic and its impact on Black America. He concluded his remarks by talking about the need for US AIDS service organizations to “retool” in order to keep pace with, and eventually end, the epidemic.  He even referenced Harlem United as an example of "what effective AIDS organizations are going to look like if we're going to end HIV" in front of a packed plenary room.  This comment kicked off a historic week. 

Here are some of the other ways Harlem United participated in the conference:

Harlem United at the Global Village

Six HU consumers and three staff travelled to DC to visit and participate in the happenings of the Global Village at the International AIDS Conference. The Global Village is a publicly accessible part of the conference that displays international initiatives to end AIDS. It hosts several interactive networking zones, talks, performances and screens most of the major plenary sessions.

Poster Presentation: Health and housing: women living with HIV in supportive housing

Harlem United not only contributed a physical presence to the conference, but also an academic one.  Kevin Rente, Associate VP for HIV/AIDS Treatment and Support Services, offered some insight into the value of housing for those living with HIV/AIDS.  In a poster displayed at the conference, Rente revealed the benefits housing delivers to Harlem United’s female clients.  Placement in to one of HU’s 586 units of supportive housing empowers clients to make safer decisions and enables them to adhere to treatment programs.  The poster highlighted the need for supportive housing programs to be included as a tool to end HIV/AIDS health disparities and bring the epidemic to a close.

We Can End AIDS March

Harlem United joined others from New York to travel down to Washington, DC and participate in the We Can End AIDS March.  Standing outside the White House, thousands of protestors echoed chants with the hope that their message would carry passed the fence, over the lawn and into the seat of American government.

The rally brought together people living with HIV/AIDS, program staff, advocates and community organizers from all across the east coast.  The rally hoped to shed light on the ways that current policies restrict the human rights of people who are HIV positive.  Many protestors carried signs urging an end to the drug war.  Some demanded the end of the criminalization of HIV.  Others advocated for a Robin Hood Tax that would tax Wall Street financial transactions.  Each trade would produce only pennies, but the tax would raise nearly a billion dollars in revenue that would go towards extending treatment for those living with HIV.

There was also a strong and visible presence of those advocating on behalf of drug users and sex workers. Their message was incorporated in the protest, but also at the conference where there were signs and placards that read ‘No drug users? No sex workers? No International AIDS Conference.’  They felt that the cost of the conference basically barred these people from participating.  They were also vocally critical of the United States travel ban in place for sex workers and drug users. 

Francisco Contreras, who works with Access to Care and marched as part of the Harlem United team said of the event, “It was an honor to be part of such as important event.  When it comes to HIV, it can’t be done quietly.” When asked about the impact of the march, HU case manager Johnny Vega remarked, “I was able to experience the force one can have if you just commit to whatever it is you believe in. We must continue to fight and find other ways to spread the word of hope.  Always count on me to be a part of the HIV/AIDS fight.”

 Please, contact Kimberleigh Smith, ksmith@harlemunited.org, with questions or requests for more information.

The U.S. Food and Drug Administration yesterday approved Truvada© (tenofovir plus emtricitabine) to be used for pre-exposure prophylaxis (PrEP). Truvada is the first drug approved to reduce the risk of HIV infection in uninfected individuals, who are at high-risk of HIV infection and who may engage in sexual activity with HIV-infected partners. Truvada, made by Gilead Sciences, is to be used as PrEP in combination with condoms and other safer sex practices in order to reduce the risk of sexually-acquired HIV infection in adults at high risk. This marks a milestone in HIV prevention!

The FDA’s Antiviral Drugs Advisory Committeerecommended Truvada be used as PrEP in May, but the FDA’s final decision wasn’t expected until September.

 Truvada as PrEP is based on the landmark iPrex clinical trial, which showed an average of 44% reduction in HIV infections among study participants when combined with risk reduction counseling and condom usage.  Protection from HIV infection became even stronger (90% efficacy) for those who consistently took the pill every day.

While many believe PrEP holds a great deal of promise, there are many implications to consider in administering PrEP to individuals and communities like those whom we serve. Harlem United has convened an internal PrEP Working Group, which is planning staff and provider education among other things. Similarly, the Policy Team will be prioritizing the subsequent policy and advocacy issues, such as ensuring access and insurance coverage. The estimated cost of PrEP is $8,000 – $9,000 per person, per year.

 More details on the programmatic and policy implications of PrEP coming to your inbox soon.

Please contact Kimberleigh J. Smith at ksmith@harlemunited.or with questions or requests for more information.

The U.S. Supreme Court today issued its ruling on the Affordable Care Act, and the landmark law is upheld. The individual mandate stands as a tax and the Medicaid expansion provision is upheld, though limited. It is estimated that as many as 1.2 million currently uninsured New Yorkers will have access to insurance coverage over the next few years and that consumers will have vital protections and benefits under the law.

The ACA is the most comprehensive reform to the American health care system since the 1960s and could benefit millions of Americans.   Most of the 90,000 New Yorkers who will become eligible for enrollment under Medicaid expansion in 2014, and the additional 700,000 who will be able to purchase coverage through the new state Health Insurance Exchanges, live and work in the same communities that organizations like Harlem United serve.  

Harlem United’s Policy staff is reviewing the opinion, but here are the headlines:

The Individual Mandate

The individual mandate survived as a tax.  Chief Justice Roberts argued, in his majority opinion, that Congress had the authority to regulate people active in the insurance market, but could not make people become active in that market.  The mandate, as initially considered by the federal government, would be a penalty to those who decided not to purchase insurance.  The court found this understanding of the mandate to be unconstitutional.  The Court felt that it was more reasonable to consider the mandate a tax.  As a tax, the court decided that the mandate would be constitutional.  Individuals are free to avoid paying the tax and face any consequences.  The preservation of the mandate enables states to more sustainably expand insurance coverage. 

The Medicaid Expansion

The Medicaid Expansion is upheld, but limited. Medicaid is funded through cooperation between the federal government and the states.  Typically the federal government pays $1 - $3 dollars for every dollar contributed by a state.  The ACA would require states to extend Medicaid coverage to all individuals with income at or below 133% of the Federal Poverty Level.  The federal government will provide 100% of the new funding needed to expand Medicaid in the first years of its implementation. In later years, this share will step down to 90% of costs covering people.  Under the ACA, as signed into law by President Obama in 2010, the federal government could withdraw its share of Medicaid dollars if a state refused to expand Medicaid.   The expansion, including the generous support of the federal government, will still be allowed, but states cannot be penalized if they chose not to expand Medicaid.

The court ruled that Congress acted constitutionally in offering states funds to expand coverage to millions of new individuals. States can agree to expand coverage in exchange for those new funds. If the state accepts the expansion funds, it must obey by the new rules and expand coverage, but a state can refuse to participate in the expansion without losing all of its Medicaid funds. Instead the state will have the option of continue its current, unexpanded plan as is. 

Chief Justice Roberts noted that when it came to issues of constitutionality, it was the Court’s job to “conserve legislation, not destroy it.”  This understanding enabled the Justices to modify the law so as to make it constitutional, but not obsolete.

Impact on PLWHAs and Homeless in New York

This expansion is significant for people living with HIV and AIDS as well as poor, single, adult individuals like the homeless. The ruling is complicated and the Justices were divided.

Starting in 2014, the Medicaid disability requirement is eliminated for most individuals up to 133% of the federal poverty level.  InNew York, a person can enroll in this new expanded Medicaid or may be eligible to get subsidies to buy commercial coverage from our Health Insurance Exchange, which was established by Executive Order by Governor Andrew Cuomo in April.  This may not be the case in some states though, and advocacy will need to continue to prevent health disparities from widening. InNew York, though:

• PLWHA who earn less than 133% of the FPL will be covered by Medicaid;
• Insurance carriers cannot refuse to provide insurance to PLWHA and cannot establish cost caps;
• PLWHA lacking access to insurance can purchase private coverage through insurance exchange (an estimated 110,000 to 440,000 individuals may become enrolled in Medicaid or the exchanges);
• Low or middle income PLWHA will be able to obtain tax credits for the cost of insurance.

Upholding the Affordable Care Act is a major victory for the people we serve and countless others, who have been shut out of the current health insurance market.

Recognizing the Affordable Care Act as the law of the land will give many people Including PLWHAs and homeless individuals access to the reliable health coverage that they need to seek and maintain continuous care, without worry of interruptions in their medical care caused by inadequate coverage or an inability to pay.

Please contact Kimberleigh J. Smith at ksmith@harlemunited.or or Andrew Leonard at aleanard@harlemunited.org with questions or requests for more information.

In just a few days, the Supreme Court is expected to make its historic ruling on President Obama’s Patient Protection and Affordable Care Act (ACA).  Twenty six states have claimed that the law violates the Constitution by forcing citizens and states to act against their will.  The ACA is the most comprehensive reform to the American health care system since the 1960s and could benefit millions of Americans.  In March of this year, one lawyer representing the United States federal government and another representing those who filed the lawsuit debated the law for three days.  Their arguments revolved around four central questions:

Is it too early to decide the constitutionality of the law? The case began with a short discussion of whether or not the Supreme Court should decide on the law before it was fully implemented.  Based on the questions asked during this session, it is unlikely that the judges have any doubts about ruling on the case now.

Can the federal government make a person buy health insurance? This question refers to the individual mandate.  Under the law, a person will be fined if they do not purchase insurance.  The fine costs about as much as health insurance, thus requiring people to pay one way or another.

Can the rest of the law remain without the individual mandate? Those who brought the lawsuit against the federal government believe that Congress voted on the ACA with the belief that the individual mandate would be upheld.  They argue that the law cannot stand with this mandate removed, because many Congressmen and Senators would have voted against the bill if it did not originally include the mandate.  Some have made the case that the individual mandate is the heart of the ACA, but others believe the Medicaid expansion is more central to the health care law. 

Is the expansion of Medicaid constitutional? Under the law, states will be required to offer at least some Medicaid coverage to most low-income people.  The federal government will pay for nearly all of the health care costs of these new Medicaid patients.  Some states are arguing that they have no choice but to expand Medicaid because of all the money that the federal government is providing.  States claim that they are being coerced, because they can’t afford to turn down this money.  Though Medicaid has been expanded before, this is the first test of the move’s constitutionality.

Please, contact Andrew Leonard, aleonard@harlemunited.org, with questions or requests for more information.

In mid-May, several members from Harlem United’s programming, administrative and policy staff traveled to Kansas City for the National Health Care for the Homeless Conference and Policy Symposium.  The annual conference is an opportunity for homeless health care providers and advocates from across the country to gather and share ideas on how to best end homelessness.

This year’s policy symposium was particularly important and timely.  With the Supreme Court’s ruling on the Affordable Care Act (ACA) expected this month, providers and advocates are anxiously awaiting to see what changes to health policy will be put into effect.  Harlem United has already taken steps to ensure that it will be prepared for the coming changes to the health care system in our state and in our country.  The Affordable Care Act, signed into law in March 2010 by President Obama, has two main goals:

1. 1.      Increase access to health care for most Americans.
2. 2.      Decrease the rapidly growing cost of medical services.

Many health care experts believe that integration of all health care services will achieve these goals.  For the homeless population, the integration of care involves the coordination of services ranging from physical and behavioral health care to social services.  Placement into housing, committed outreach and coordination of care have the potential to improve health outcomes and lower costs. Presentations delivered by Harlem United staff helped fellow agencies prepare for the health policy changes associated with the upcoming Affordable Care Act.

Health and Housing: Women Living with HIV/AIDS in Supportive Housing

In one of the conference’s first presentations, Kevin Rente, Associate VP for HIV/AIDS Treatment and Support Services, offered some insight into the value of housing for those living with HIV/AIDS.  Research has shown homelessness to be a significant predictor of poorer health.  Lack of stable housing leads to riskier behavior, heightened exposure to illness and trouble managing chronic conditions and medications.  Homeless individuals visit the emergency room more often than stably housed individuals.  Placing homeless individuals and families into housing improves health outcomes and lowers costs.

The presentation focused largely on the benefits housing delivers to Harlem United’s female clients.  Unstably housed women living with HIV/AIDS face a death rate 9 times higher than women in stable housing.   Placement in to one of Harlem United’s 586 units of supportive housing empowers clients to make safer decisions and enables them to adhere to treatment programs. 

As the nation moves towards achieving the goals of the ACA, providers of medical services for the homeless must strongly advocate for increased access to housing. One study showed that the public savings associated with placement into housing (reductions in ER visits, ambulance rides, court costs, etc.) offset 95% of the costs of supportive housing. 

From Fee-for-Service Medicaid to Medicaid Managed Care

If the health care law is upheld, the most significant change will be the expansion of Medicaid to most individuals with assets at or below 133% of the Federal Poverty Level.  Most of these newly eligible patients will be placed in an insurance model known as “managed care.”  As of April 1, 2012, New York began enrolling homeless individuals and families, including many Harlem United clients, into managed care.  Previously, homeless patients received care under Fee-for-Service, or “Straight Medicaid.”  Patients could be seen by any provider in the state, as long as that provider accepted Medicaid.  Under the managed care program, homeless men, women and children receive care in a network system similar to that of main stream private health plans.  A patient has a single primary care provider who coordinates their care and obtains pre-authorization for specialty care provided by participating (in-network) doctors.

Doug Berman, Senior Vice President for Policy, colleague Matthew Slonaker of Care for the Homeless, and Andrew Leonard, Research Assistant, presented on the transition to managed care for homeless persons in New York State.  The managed care system may prove beneficial for the health of homeless consumers, but it must be carefully tailored to meet the complex needs of these individuals.  Moving from shelter to shelter, homeless patients have difficulty receiving care in a fixed geographic area and have no permanent address at which to receive mailings sent by the managed care organizations.  This presentation, led by Harlem United members, focused on how to create a managed care system that best accommodates the particular and complex needs of homeless clients and providers.  Tamisha McPherson noted, “The big takeaways from the conference were the changes coming with Medicaid managed care.”  As agencies look to transition their clients to managed care they will look to the model developed by Harlem United.

Patient Centered Medical Home and Its Impact on HCH

Now that state and federal policies are looking to integrate all forms of care, providers are looking to replicate the success of Harlem United’s plan.  The evolving model for the integration of care is the Patient Centered Medical Home (PCMH).  For many years, Harlem United has provided integrated care for its clients under this model.  On the final day of the conference, Tamisha McPherson, Associate VP of Health Services, and Thomas Marino, Senior Director of Quality Management, delivered a presentation that offered advice on how other agencies could effectively implement the PCMH model. 

The Patient Center Medical Home model seeks to improve access to care and care coordination.  Harlem United’s Care Coordination and Access to Care (ATC) efforts helped to keep 88% of patients in care over the course of a year.  These efforts include things like case management, support groups and even housing placement assistance.  Often, those in need of ATC services have the worst health and are the most difficult to treat.  Among a group of Harlem United patients targeted for ATC services, 85% had a detectable virus load at first contact.  Following the receipt of primary care and ATC services, only 42% of this difficult population had a detectable virus load.

Advocacy Points

As the nation prepares for the likely implementation of at least some aspects of the ACA, medical providers will be looking to Harlem United for advice and support. Harlem United will remain committed to advocating for the issues presented during this year’s conference:

1. Harlem United works to promote the development of new affordable housing units in New York City and supports the expansion of permanent supportive housing programs that improve health outcomes and reduce public costs.
2. Harlem United supports efforts to create a Medicaid managed care system that preserves access to care for patients and financial viability of providers.
3. Harlem United works to ensure proper reimbursement for activities that further integrate care and maintain access and adherence to critical medical and social services.

Please, contact Andrew Leonard, aleonard@harlemunited.org, with questions or requests for more information on any of these issues.

By: Andrew Leonard

I looked at my watch and saw that it read 11:45am.  Our first meeting was scheduled to begin in only fifteen minutes and we were not even off the bus yet.  Over thirty of us had traveled from Harlem, leaving at 7:00am for the chance to speak with our elected officials about the need for positive HIV/AIDS policies.  Together as clients and staff, we spent the morning preparing our pitch to eleven Congressional staff members.  The bus strode up East Capitol Street and came to a stop in front of the Lutheran Church of the Reformation; the central meeting point for all the advocates attending AIDS Watch 2012 – the nation’s largest constituent based advocacy day.

The Capitol building loomed ahead of us; its tranquil magnificence masking the street-level frenzy that pushes our federal government forward.  Finally off the bus and after a quick pit-stop, we hurridely began walking towards the Rayburn House Office Building.  Being my first ever experience as an advocate, I was paired with two veterans of the advocacy game.  Each walked towards the offices with a remarkable, casual confidence.  Although I had been designated the “team leader,” I knew the real expertise and influence was found in my team members; one gentleman from Harlem United and another from the Gay Men’s Health Crisis (GMHC). 

As we made our way through security and up to our first meeting, they each spoke of their prior experiences; helping to make me feel more at ease.  Standing in front of the large wooden door makred with the name of Congressman Joseph Crowley, my teammates assured me that our first visit would be a success. And they were right.

I initiated the meeting by introducing the team and explaing that we had come to discuss HIV/AIDS policies and health care inequalities.  Following my introduction, my teamates began sharing their stories.  With the weight of experience strengthing their comments, my fellow advocates spoke with an invigorating truth and compelling passion.  They brought these policies - Ryan White, the Affordable Care Act, Syringe Exchange - to life with their tales of struggle and triumph in a life effected by HIV/AIDS. 

When I asked Harlem United client, “Shortie,” what message he wanted to bring to Congress, he said three things.  First, “Stop. Think if it were you.” Second, “Cut the bureaucracy. Less talk.” Third, “Don’t look at half of the picture.  Be honest.” 

By sharing their stories, our clients along with those of GMHC and the Latino Commission on AIDS began to present the reality of life with HIV and few resources for affordable housing.  They put a human face to a line item on the budget.  “I have a right to live and I have a right to housing,” commanded Shortie. 

Michael, a fellow Harlem United client, added, “We gave them a better picture…It’s important to let them hear us.”  He went on, “There’s a lot of stuff that’s not right…Famililies are living on the train.  [Young] people are sleeping on the train.  It’s not right.  Every one should get treated with the same, equal respect.  We are somebody.  We are human.”

When asked why he participated in AIDS Watch, Shortie answered, “I felt it was my duty to give more insight.  I had heard so much about it.”  Having been involved with Harlem United for many years, Shortie knows a great deal about the policy issues affecting those who are living with HIV/AIDS, those who must fight for their right to health care and those who have no place to call their own.  He has seen, first hand, how attitudes towards HIV/AIDS and homelessness have changed over the years.  While some progress has been made, Shortie underscores the importance of making his voice heard and continuing the fight for positive treatment of fellow consumers.

Indeed, great progress has been made to eliminate HIV/AIDS through Medicaid,the Ryan White program and others.  Research conducted by the National Institute of Health has made tremendous strides towards finding ways to end the transmission of the virus.  And the Affordable Care Act offers an unprecedented opportunity to bring deeply needed health care services to those who previously went without.  But the need for action and advocacy has never been greater.  With a committed effort and support from our federal policy makers, we work to end the HIV/AIDS epidemic.  As one of my fellow advocates remarked to a legislative director, “HIV ends with me.” 

By telling their stories and relaying how sincerely helpful these much needed federal programs have been in their lives, our clients spoke truth to power.  What had previously been an item on an agenda or a line on a budget was now a person and a story. 

As we all gathered near our bus to begin the trip back to Harlem, I reflected on my experience.  I felt inspired by the day.  Most of all, I was inspired by the tremendous courage and skill with which our clients brought these issues to life and advocated for their renewal.  More than any facts or figures, their passionate stories made powerful testimonies to the evidence of progress and the continued need for change in the world of HIV/AIDS policy.  Leaving the Capitol that afternoon, the thrill of the experience finally began to settle in.  I was enlivened by our involvement in the democratic process and our ability to create change, but also by the need to commit to future action.  I am thrilled to have the opportunity to continue working with our strongest advocates, our clients, as we labor towards policies that ensure the best health and housing for those living with HIV and AIDS, in our city and our country.

Harlem United’s Policy Division has worked hard over the last few months to advocate for state funding and legislation that supports our clients and services. Here are just a few highlights, of particular relevance, to Harlem United. For more information, contact Kimberleigh Smith directly at ksmith@harlemunited.org.

 New York State Budget

A day ahead of schedule and with much less hostility than years past, the Legislature and Governor Andrew Cuomo - at the very end of March - reached agreement on a New York State 2012-13 budget that authorized spending $132.6 billion.

• The budget includes roughly 4% increases in state spending Medicaid, but maintains an annual limit on how much the state can spend on Medicaid.
• In spite of ongoing state fiscal issues, there are two new appropriations for the AIDS Institute. One is for the Community Service Programs and the other is for the Multiple Service Agencies/Community Development Initiative. Each equals $525,000. Harlem United is both a CSP and an MSA. HU’s $1 million CSP program supports our Uptown Health Link initiative.
• The AIDS Drug Assistance Program received the same funding as last year, in the amount of $42.3 million. Unlike many other states,New York’s ADAP program does NOT have a waiting list.
• The LGBT Health and Human Services Initiative also received level funding, with an appropriation of $5.26 million. Harlem United receives a portion of this funding as well.
• NY/NY III – the joint supportive housing initiative between New York City and New York State - received a welcome increase of $1.8 million. Harlem United has two NY/NY III contracts, which supports housing for 70 clients.
• Regional & Targeted HIV, STD and Hep C Services received an increase $833,600, bumped up to $26,297,600.
• The budget establishes and funds a new Supportive Housing Development Program that will provide service funding, rent subsidies and capital dollars to create supportive housing for high-cost Medicaid recipients. The new fund will be funded with $60 million of State general funds this year, and $75 million State general funds in each of the following two years. It’s expected that this funding will leverage tens of millions more in additional public and private investment, beginning in its first year.  
• Also, included in the budget is language for “Provider Prevails” for anti-psychotic drugs. This gives health care providers the final say on prescribing these treatments to Medicaid beneficiaries.  Much more needs to be done to address access to many other types of drugs.
• Largely, as a result of the hard work of the Health Disparities Workgroup of the Medicaid Redesign Team, large drug store chains and mail-order pharmacies will be required to offer translation services.
• Promoting Primary Care Professions Loan Repayment Program will be expanded to include: Dentists, physician assistants, midwives, nurse practitioners, social workers and therapists (we advocated for this with the Community Health Care Association of New York State!).
• Finally, while not included in the enacted budget, the Governor established a Health Exchange by Executive Order. This is an online market place where individuals and businesses can choose among health insurance providers.  The Affordable Care Act requires each state to put an insurance exchange in place by 2014.

NYS Legislative Priorities Still in Progress:

• The “30% Rent Cap” remains a stubborn issue. Harlem United worked with its networks to push the bill through the Medicaid Redesign process as well as the budget, neither of which was successful. HU is working with VOCAL to set up a large meeting with bill sponsors to talk about post-budget strategy.
• “No Condoms as Evidence” bill. This bill would make it illegal for condoms to be used as evidence of prostitution.
• The Gender Expression Non-Discrimination Act (or GENDA) is another important piece of legislation, which - if enacted – would serve as a first step to ending the legal discrimination and social barriers faced by transgender people.  It would ensure equality in education, housing, healthcare and employment, enhance safety and promote culturally-competent medical care and delivery.

The April 1^st elimination of the homeless exemption is rapidly approaching.  Here are some key points about managed care to be aware of (Please, note that official guidance has not been issued.  Items are subject to change.):

• Phase-In:
  • On April 1, 2012, the managed care exemption for the homeless population will be eliminated.  Homeless individuals in Fee-for-Service who are known to DOH will lose their managed care exemption. 
  • Families in the Bronx and Manhattan will be the first cohort phased-in beginning April 1.  Families in Brooklyn, Queens and SI will be enrolled in May.  Single Adults and Adult Families (no children) will be enrolled in June and July according to borough.  Lastly, street homeless will be enrolled in August and September.
  • Notifications:
    • On April 1, all new mandatory populations (including the homeless) will receive a “heads up” letter explaining the loss of their exemption. 
    • 30 days later, a second mailing will be sent informing the consumer that they must choose a managed care plan within 30 days.
    • Notifications for families will be sent directly to the families in shelter.
    • Shelter notifications for single adults will be sent to the shelter director for distribution to the residents.
    • If an individual or family cannot be reached by mail, enrollment will be delayed until such a time that they can be contacted through an alternate method.
    • Facilitated Enrollers:
      • DHS shelter staff and Maximus staff will help educate patients on the plans and their rights as Medicaid MC consumers.
      • Facilitated Enrollers will recommend consumers enroll in a plan with which their shelter or preferred provider is contracted.

• Good Cause Disenrollment:
  • Typically, patients have 90 days after signing with a plan to disenroll and choose another managed care plan. 
  • Homeless individuals and families will not be restricted to the 90 day time frame.
  • Arriving in a new shelter will be seen as good cause for disenrollment throughout an individual’s lifetime.
  • Residing in a shelter whose providers do not participate in the consumer’s plan will be seen as good cause for disenrollment.
  • PCP Switch:
    • State DOH has promised to press the managed care organizations to allow homeless consumers to change their primary care provider in a quick and easy manner.
    • Initial Assessment:
      • Initial Assessment will only be done at assessment and intake (PATH) shelters.
      • 16 Hour Rule:
        • The 16 Hour Rule will be relaxed for homeless providers.  The 16 hours will be calculated as the aggregate of the hours a mid-level practitioner (NP or PA) works at all practice locations and sites (licensed satellite sites).
        • Provider Panels
          • Homeless providers will not be included on the plans’ general population panels.
          • Non-homeless patients will be incapable of selecting homeless providers.
          • The state continues to seek a resolution for providers who accept patients from the general and homeless populations.
          • Consumer Representation
            • Consumers will be able to delegate responsibility for NY Medicaid CHOICE decisions to a consumer representative (i.e. the provider).
            • Authorization for representation can be given in verbal or written form.

• Increase community-based, evidence-driven combination HIV prevention interventions
• Eliminate health disparities through comprehensive and interdisciplinary health care
• Remove structural and systemic barriers to accessing needed prevention, health care, and treatment services

Harlem United believes that the organizing principle driving HIV policy and resource allocation should be a nationally-coordinated and vigorous scale-up of routine HIV testing complemented by universal access to care and treatment. Further, we firmly support combination prevention, that is, behavioral, structural and biomedical approaches to prevention that are based on scientifically-derived evidence with the wisdom and ownership of community.

Community health

Health Care Reform

Patient Protection and Affordable Care Act (PPACA)
President Obama signed historic legislation, known as the Patient Protection and Affordable Care Act (PPACA) (H.R. 3590) into law on March 23, 2010. Additional tweaks to improve the bill were made by the subsequent passage of the Reconciliation Act of 2010 (H.R. 4872). The legislation makes significant improvements to health care access and quality each year as the Administration works to implement the law.

PPACA will make health insurance available to more than 30 million Americans who are currently ineligible or unable to afford health insurance starting on January 1, 2014. In addition, PPACA will lower drug prices for seniors, prohibit shameful insurance company practices like denying coverage for pre-existing conditions, imposing harmful annual and lifetime coverage limits, and terminating coverage when a beneficiary becomes sick. The bill will also provide tax breaks for individuals and small businesses to assist them with paying for mandatory health coverage.

Harlem United works in coalition with many partners to ensure that health care reform will work for people living with HIV or AIDS or managing multiple co-occurring health conditions. Below are some of the most relevant accomplishments achieved in the bill:

• Access to Medicaid Health Insurance for low-income persons: Historically, Medicaid eligibility has been restricted to individuals who were not only very poor, but were also disabled, a child or an eligible parent of a child. The bill permanently changes Medicaid eligibility requirements allowing any legal U.S. resident with income eligibility at or below 133% of the federal poverty level (FPL) to gain access to health care. This is significant progress, but falls short of universal access to health care. Health care access maintains and improves individual and community health and should therefore be accessible to everyone in the United States.
• Eliminate Categorical Eligibility Requirements: Health insurance companies will no longer be able to deny access to health insurance to individuals who have a pre-existing medical condition. The impact of this component in the legislation is very significant. Too many people suffering from chronic conditions have been unable to access the care that they need due to financial barriers. More people will be eligible for health insurance through Medicaid and private insurance when the proposed state exchanges are established. Immediately, health insurance plans were required to offer health insurance to children regardless of pre-existing condition and in the summer following the bill's passage, young adults achieved the ability to stay on their parent's health insurance until they turn 26.

Persons that don't meet the criteria for publically funded programs and do not receive health insurance through employer-sponsored programs will be required to purchase health insurance. A state-established health insurance exchange will be established that will serve to create choice and competition among available health care plans for individual purchase. Individuals and small businesses will receive a tax break to assist them in affording the new mandate. The amount of assistance that will be made available via tax credit will be improved through passage of the H.R. 4872 - Reconciliation Act of 2010.

• Sets Standard for Health Program Benefits Package: The Secretary of Health & Human Services is given authority to establish a "minimum benefits" package that must be met by public funded programs and health insurance programs included in the exchange. The "minimum benefits" package will be a matter of public record and open for comment prior establishment. The Institute of Medicine has been tasked with providing recommendations for what should be included in the essential benefits package and we will work to make sure that comprehensive, high-quality care is a key consideration in that decision-making.
• Addresses Health Care Related Disparities: PPACA requires qualified health plans to implement activities to reduce health disparities, including the use of language services, community outreach, and cultural competency. The bill will support state grants to health care providers who provide services to a high percentage of medically underserved or other special populations. Six months after enactment, the bill will provide grants to up to 10 states to provide access to comprehensive care at reduced fees to the uninsured. The bill also promotes the Office of Minority Health to be on par with other HHS departments and embeds minority health within HHS departments as well.
• Establishes a National Strategy for Quality Improvement in Healthcare: Establishes a national strategy to improve delivery of health care services, patient health outcomes, and population health. The Secretary shall ensure that priorities will: have the greatest potential for improving the health outcomes, efficiency, and patient-centeredness of healthcare for all populations; identify areas in the delivery of healthcare services that have potential for rapid improvement in the quality and efficiency of patient care; address gaps in quality, efficiency, comparative effectiveness information, and health outcome measures and data aggregation techniques; improve Federal payment policy to emphasize quality and efficiency; enhance the use of healthcare data; address the healthcare provided to patients with high-cost chronic diseases; improve research and dissemination of strategies and best practices to improve patient safety and reduce medical errors, preventable admissions and readmissions, and healthcare associated infections; and, reduce health disparities across health disparity populations and geographic areas.
• Requires Plans in the Exchange to Contract with Ryan White Providers: PPACA will require plans to contract with essential community providers including 340b(a) funded providers, which could be considered another indicator of strong support for the Ryan White program. The bill also authorizes grants for a new Community-Based collaborative Care Network Program, consortia of health care providers that deliver "comprehensive coordinated and integrated health care services" for low-income populations, including case management and transportation.
• Improves Access to Medical Home-based Care: The bill creates a Center for Medicare/Medicaid Innovation that will pilot test innovative service delivery and payment models for reducing cost growth, including the medical home. It will also establish grant programs to support medical home care delivery through community health teams to provide support services to primary care providers and to provide capitated payments to primary care providers. Also establishes a grant program for states to create Primary Care Extension Agencies whose mission would include supporting implementation of medical homes. The bill also establishes a new Medicaid state option to provide coordinated care to beneficiaries with a chronic condition through a "health" home.
• Codifies Prevention and Wellness in Health Care: PPACA establishes a Prevention and Public Health Fund with a budget of $15 billion over 10 years which will be tasked to develop a national strategy to prevent disease, promote health, and improve public health. The bill also creates an Interagency Council to provide coordination and leadership at the Federal level. The bill requires coverage of U.S. Preventive Services Task Force screenings that receive a grade A or B. Provides $75 million per year through FY2014 for Personal Responsibility Education grants to States for programs to educate adolescents on both abstinence and contraception for prevention of teenage pregnancy and sexually transmitted infections, including HIV/AIDS.
• Improves Access to Prescription Drug Coverage through Medicare Part D: PPACA will begin to close the donut hole via a one-time $500 decrease in the coverage gap and a new drug discount program. The bill will also allow contributions paid by ADAPs to count toward the true out of pocket cost limit (TrOOP) under Medicare Part D starting in 2011 and gives the Secretary of HHS the authority to determine criteria for the "protected classes". Given the expense and the absent availability of generics for most antiretroviral therapies, it is vital that these drugs be included as a protected class for beneficiaries living with HIV or AIDS.
• Establishes a new Community Health Center Fund: Under the Public health Service Act, this fund is intended to improve access to care by increasing funding by $11 billion for community health centers and the National Health Service Corps over five years (effective fiscal year 2011); establishing new programs to support school-based health centers (effective fiscal year 2010) and nurse-managed health clinics (effective fiscal year 2010).
• Comparative effectiveness: The bill creates a federally sanctioned, private comparative effectiveness research entity to identify priority areas of comparative clinical research and oversee the conduct of this research. The organization should include representatives of stakeholders in the healthcare system and be funded by government and private stakeholders.

Medicaid Redesign

Governor Andrew M. Cuomo in January issued an Executive Order aimed at redesigning Medicaid. The order called for the creation of a new Medicaid Redesign Team to find ways to save money within the Medicaid program in the state's budget for the 2011-12 Fiscal Year.

The Medicaid Redesign Team is comprised of 27 voting members appointed by the Governor and began in January. A series of public hearings were held across the state in the winter of 2011 to gather ideas on how to improve quality and cuts costs in Medicaid.

The MRT then was charged with culling through several thousand suggestions received from the public to identify 274 proposals that appeared to have the most promise. The Department of Health in mid-February short-listed 49 proposals for more focused review by the Medicaid Redesign Team.

The state budget that was enacted in March implemented a majority of the MRT recommendations and reflects $2.3 billion in spending reductions with $425 million in lower-than-expected expenditures to reach the Governor's original savings target of $2.85 billion.

Harlem United has been actively engaged in the state's Medicaid Redesign efforts.

Here are a few of the issues we continue to track:

• Two-Percent Across-the-Board Medicaid cut. The Legislature modifies the Governor's proposal to reduce Medicaid payments by 2%. The enacted budget reduces all Medicaid payments for services provided after April 1, 2011 by a uniform 2% reduction for a two-year period, effective 4/1/11 and ending March 31, 2013. The original proposal was to make this reduction permanent. Alternative methods to create savings may be considered at the discretion of the Commissioner of Health and Director of Budget, in consultation with the "health care industry" by writing to the Senate and Assembly not less than 30 days before the date on which implementation will begin. Also, of note, certain Medicaid payments are exempt from the reduction, including but not limited to any reductions that would violate Federal law, payments the State is obligated to make pursuant to court orders and judgments. The latter provision would render our FQHC reimbursements exempt, while all other reimbursements (ADHC, COBRA, etc.) are subject to the 2% cut. This will impact 3 out of 4 Medicaid-reimbursable programs at Harlem United. The total reduction amounts to more than $160,000, which could result in the loss of the following: a nurse, or clinical director; and LPN or clinical social worker; or more than 14,000 meals between our two ADHC programs.
• Homeless Exemption. The budget modifies the proposal to expand Medicaid Managed Care enrollment and access to services by including previously exempted populations, such as the homeless. The language reads, "The following categories of individuals [will not] may be required to enroll with a managed care program [until] when program features and reimbursement rates are approved by the commissioner of health and, as appropriate, the [commissioner] commissioners of the department of mental health, the office for persons with developmental disabilities, the office of children and family services, and the office of alcohol and substance abuse services … " Currently, in NYC all homeless people are exempt. Outside NYC, exemption of homeless people living in a shelter is at the discretion of the county. Enrollment will begin in April 2012.
• Eliminate Part D Wrap in Medicaid. The enacted Budget eliminated the Part D wrap-around coverage for anti-retrovirals, anti-depressants, atypical anti-psychotics and anti-rejection drugs in Medicaid.
• Move pharmacy benefit into Medicaid Managed Care. The enacted Budget accepts the proposal to move the Medicaid pharmacy benefit from fee-for-services into Medicaid Managed Care. The change also moves the prescription drug benefit back into Family Health Plus.
• Eliminate carve-out for currently exempt drug classes. The enacted Budget accepts the Governor's proposal to eliminate the "carve-out" for four classes of drugs from the Medicaid fee-for-service drug benefit - anti-retrovirals, anti-depressants, atypical anti-psychotics and anti-rejection drugs - meaning these products may not be subject to prior approval for those beneficiaries who remain in fee-for-service Medicaid.
• Patient-Centered Medical Homes. The new budget modifies the proposal to expand the Patient-Centered Medical Homes model whereby the commissioner is authorized to establish medical home multi-payor programs in which enhanced payments are made to primary care clinicians and clinics statewide that are certified as medical homes for the purpose of improving health care outcomes and efficiency through improved access, patient care continuity and coordination of health services.
• Health Homes. Similarly, the commissioner is authorized, in consultation with the commissioners of the office of mental health, office of alcoholism and substance abuse services, and office for people with developmental disabilities to establish - in accordance with applicable federal law - standards for the provision of health home services to Medicaid enrollees with chronic conditions and come up with all the payment methodologies, eligibility requirements, etc. that go along with setting such services up.

Historic HIV Testing Law

Harlem United worked with partners, the National Black Leadership Commission on AIDS (NBLCA) and the Latino Commission on AIDS (LCOA), to pass an historic HIV testing law, which amends New York State's public health law and allows patients undergoing rapid testing for HIV to give informed consent orally (instead of in writing) and requires physicians in all health care settings routinely to offer an HIV test to persons between 13 and 64 years old. The law was in enacted in July 2010 after years of advocacy.

In addition to the "required offer" provision, the legislation:

• Provides durable consent. Written consent for an HIV test will be part of the general consent to medical care with an opt-out for HIV testing. This will be durable unless patient changes providers or revokes the consent;
• Allows for oral consent in settings when rapid technology is used (except for correctional facilities);

The legislation brings New York State closer to the Centers for Disease Control and Prevention's (CDC) 2006 HIV testing guidelines. Twenty states required separate, signed consent before the 2006 recommendations were issued. To date, 19 states have changed their laws to be more compatible with CDC's recommendations for oral or written informed consent that may be incorporated into a general consent for medical care. Legislation is pending in Pennsylvania (to eliminate requirements for written consent, as well as Michigan and Massachusetts. Although New York's legislation removes requirements for written consent specifically for rapid tests it also permits the required written consent to be incorporated into the general medical consent, with a space adjacent to the signature specifically reserved for written declination of HIV testing, intended to streamline the process.

National HIV/AIDS Strategy

The White House released the United States' first National HIV/AIDS Strategy on July 13, 2010. Leading up to and throughout the 2008 Presidential campaign, HIV/AIDS community advocates urged candidates to commit to develop an evidence-based, outcome-driven strategy to end the U.S. HIV epidemic. The highly regarded President's Plan for Emergency AIDS Relief (PEPFAR) requires all countries who apply for funding to submit a comprehensive strategy to accomplish the goals of PEPFAR. The result has been an increasing coordinated and outcome-driven response to the international AIDS pandemic.

Each year approximately 56,000 people are infected with HIV and more than 1.1 million people are living with HIV or AIDS in the United States. However, just half of those who are living with HIV have regular access to medical care and almost a quarter of them are not aware they are even living with the virus. The National HIV/AIDS Strategy establishes three goals to be accomplished by 2015 toward attainment of the following vision:

"The United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high-quality, life-extending care, free from stigma and discrimination"

The three primary goals of the National HIV/AIDS Strategy are to:

• Reduce new HIV infections
• Increase access to care and improve health outcomes for people living with HIV
• And, Reduce HIV-related health disparities

You can view a copy of the National HIV/AIDS Strategy and its accompanying Federal Implementation Plan by visiting the web site for the Office of National AIDS Policy at the White House by clicking here.

The lead federal agencies for implementing the Strategy—Health and Human Services, Housing and Urban Development, Department of Justice, Labor, Veterans Affairs, and the Social Security Administration submitted to the Office of National AIDS Policy (ONAP) and the Office of Management and Budget (OMB) detailed operational plans for implementing the Strategy within their agencies. You can view each of the operational plans by clicking here.

A grassroots coalition came together to urge presidential candidates to commit to develop a national strategy to combat the domestic HIV epidemic. The candidate Barack Obama, Hillary Clinton, and John Edwards all committed to develop a strategy, if elected. Once President Obama was inaugurated, the Coalition for a National HIV/AIDS Strategy developed documents to inform the development of the strategy and continues to remain engaged in implementation efforts following the strategies release in July 2010. You can access resources and posts developed by the coalition by visiting their web site here.

Kimberleigh J. Smith, MPA joined Harlem United in January 2010 as the Senior Director for State & Local Policy. Kimberleigh has dedicated her diverse, 17-year career to improving health and promoting social justice for communities of color. She brings a background as a journalist, non-profit grants writer and fundraiser, international AIDS program volunteer, policy analyst, advocate and a graduate of New York University's Robert F. Wagner Graduate School of Public Service.

Soraya Elcock rejoined Harlem United as the Senior Director of Policy and Business Development. Ms. Elcock left Harlem United in December, 2009 after ten years with the agency. From 2006-2010 she served as the Vice President for Policy and Government Relations. From 1999 - 2006, she served as the Deputy Director of the Prevention division building the agency's prevention portfolio from $200,000 thousand to over $6 million dollar and managing a 40 person staff. In her capacity she represented the agency on city, state and federal policy issues and was a Mayoral appointee to the New York City HIV Health and Human Services Planning Council -- responsible for setting priorities and determining how $110 million in federal Ryan White funds is spent.

Community Healthcare Association of New York State - www.chcanys.org

The New York City Providers of Health Care for the Homeless
- 30 East 33rd Street, 5th Floor
- 212-366-4459 x 206

Federation of Protestant Welfare Agencies - www.fpwa.org

Housing Works - www.housingworks.org

Medicaid Matters New York - www.medicaidmattersny.org

Supportive Housing Network of New York - www.shnny.org

VOCAL NY - www.vocal-ny.org/