By Hernan Molina -
This event is especially meaningful as PLWAs themselves are the main focus of these meetings with legislators and their staffers; heartbreaking, inspiring stories took center stage during these meetings as opposed to just having professionals speaking in statistical tongues. This was by far a quintessential grassroots effort as PLWAs shared their stories that included single mothers and men living with this ugly disease and fighting to keep a decent standard of living without slipping into financial oblivion, and today are living healthy and productive lives with a high degree of empowerment.
The climate in the Capitol, not surprisingly, was the same as years’ past; Democratic legislators such as Karen Bass, Adam Schiff, Henry Waxman and others were all very supportive (it kind of felt like preaching to the choir) while the reception by some Republicans was timid at best and cold at worst. Nothing new to report, at least on this front.
One thing we all felt was an underlying contradiction between the desired outcomes and the current budget balance and deficit reduction proposals. Translated to plain spoken English: while some key initiatives like the National HIV/AIDS Strategy call for a reduction in the number of annual HIV infections – which the Centers for Disease Control says has remained steadily at 56,000 per year – several states are imposing ADAP (AIDS Drug Assistance Program) waiting lists that have practically put people’s lives on hold.
To be exact, as of February 3, 2011, 6,001 Americans are waiting to access ADAP so that they can start receiving life- saving medications. The worst state for PLWAs today is Florida with 3,085 people waiting for meds, followed by Georgia with 920, Louisiana with 645, Virginia with 420, Ohio with 390, South Carolina with 386, and then Arkansas, Wyoming, Montana – all with less than 50 people in their waiting lists, according to the National Alliance of State & Territorial AIDS Directors (NASTAD).
But the story of waiting lists is just a chapter of the entire story, as a large number of states have opted for higher share of costs (co-pays) and/or reduced drug formularies. And while some access is better than no access, we all asked ourselves: how can we achieve reductions in care costs when people are not able to get the medications that could prevent them from getting sick and ultimately ending up in an emergency room where costs can be ten times higher than what it would cost during a regular outpatient doctor’s visit?
And as we wondered about this, last Thursday, Feb. 24, the White House National AIDS Policy released a report called “A Call to Action: Leveraging Private Sector Support for the National HIV/AIDS Strategy.” (See below) In this document, the Obama administration continues to set the tone for the implementation of the National HIV/AIDS Strategy, which was announced last July by the President. At that time, President Obama declared “the Federal government can’t do this alone, nor should it. Success will require the commitment of governments at all levels – businesses, faith communities, philanthropy, the scientific and medical communities, educational institutions, people with living with HIV, and others.”
Some of the priority areas highlighted in this document address 1) the gap in access to HIV medications, 2) detail how PLWAs can take full advantage of the newly enacted Affordable Care Act, also known as a health care reform legislation, 3) supporting innovative partnerships in the cities and communities with the highest incidence of HIV/AIDS cases so as to better integrate resources and deliver better results.
The White House’s announcement is timely as we enter a time in which budget negotiations will include the adoption of measures aimed at containing the ever-growing fiscal deficit. This is sure to mean making difficult choices that will include cuts to services that will directly affect the poor and disabled, as this group of people depend on government assistance programs.
For LGBT POV, I consulted with veteran AIDS advocate and former Executive Director of the Presidential Advisory Council on HIV/AIDS Daniel Montoya, who worked in the National AIDS Policy Office under President Bill Clinton on the recent announcement by the administration. Montoya, who now serves as Deputy Executive Director for the National Minority AIDS Council (NMAC), stated:
“Partnerships between the public and private sectors have always played an integral role in our nation’s response to AIDS, and will be crucial to the implementation of the National HIV/AIDS Strategy. But currently, we see the private sector stepping in to fill gaps in government funding. Less than a month ago, while Congress debated budget cuts to health programs, charities and national pharmaceutical companies ensured that over 6,000 Floridians received life-saving medications. NMAC urges Congress to support the Strategy and demonstrate a similar level of commitment to the health of its people.”All in all, these visits continue to afford PLWAs and professional agency staffers with opportunities to educate legislative aides who, in most cases, are younger than the epidemic itself. At the same time, these meetings are not only an incredibly valuable educational experience that dispel myths and open minds – the meetings are also empowering for people living with the disease. As one of the attendees told me:
“I am as much here for me as I am here for those who have yet to find a voice within themselves to express their fears and share their gift and strength.”The White House Blog:
A Call to Action: Leveraging Private Sector Support for the National HIV/AIDS Strategy
Posted by Melody C. Barnes on February 24, 2011 at 05:02 PM EST
When President Obama released the National HIV/AIDS Strategy in July 2010, he said, “The Federal government can’t do this alone, nor should it. Success will require the commitment of governments at all levels, businesses, faith communities, philanthropy, the scientific and medical communities, educational institutions, people living with HIV, and others.”
Clearly, success at achieving our aggressive goals in the Strategy depends not only on Federal leadership, but new investments and new partnerships from all parts society. We know that some of our biggest successes in fighting HIV/AIDS have come about because of private sector initiatives, and we’ve called on businesses and foundations to provide that next level of leadership by stepping up their efforts in a few targeted areas. We want to hear about your successful partnerships and new ideas for working together.
Priority areas where private sector partners can help us to achieve the National HIV/AIDS Strategy goals are:
• Bridging the gap in access to HIV medications: Over the past year, a growing challenge has arisen as an increasing number of people living with HIV are placed on waiting lists for state operated AIDS Drug Assistance Programs (ADAP). Most states have managed to avoid imposing these waiting lists, but nearly 6,500 people in 11 states are currently on waiting lists. Even states without these lists have had to make difficult decisions such as to restrict the scope of drug coverage available or to limit the income standards of people who qualify for assistance. The Federal government has a role to play in responding to this situation and states must remain committed to investing in these programs, but we need the continued commitment from our private sector partners to weather the economic downturn that is afflicting many parts of the country. Pharmaceutical companies and related charitable organizations have maintained patient assistance programs that provide critical aid to those in need. We are appreciative that these companies have maintained and increased their commitments in this area. Foundations have also helped to support community efforts to bolster state investments in programs providing HIV medications.
• Ensuring that the HIV community and people living with HIV take full advantage of the benefits of the Affordable Care Act: The Affordable Care Act will greatly expand access to insurance coverage in 2014, and there are already numerous immediate benefits for people living with HIV and others. Private sector partners can help the HIV community work through the implementation phase by helping people living with HIV and the HIV care system learn about the improvements in insurance coverage and critical steps to be taken both to ensure that no new gaps in coverage appear as people gain new coverage. Private sector partners also can ensure that HIV clinics, clinicians, and services providers are adapting to and engaging in the newly expanded insurance system.
• Improving understanding, reducing stigma, and communicating actionable information to the public, especially among most affected communities: The Centers for Disease Control and Prevention (CDC) and other Federal agencies have a role to play in operating social marketing initiatives and other programs to improve understanding about HIV. At the same time, the private sector has unique experience, expertise, and assets to bring to bear. As we focus on the populations and communities at greatest risk, private sector partners can help to deliver action-oriented information on issues such as prevention, testing, and treatment, including promoting early entry into clinical care for people living with HIV and increasing knowledge about HIV and reducing stigma surrounding HIV/AIDS. The private sector can also fill an important need by strengthening critical community institutions and supporting capacity building of community based organizations within the communities most disproportionately impacted by HIV, such as within local organizations serving Black and Latino gay men, youth (including homeless youth and LGBT youth), substance users, and women of color.
• Supporting innovative partnerships in the cities and communities with the most cases of HIV: CDC has begun important work in the twelve jurisdictions in the United States with the greatest number of people living with AIDS. HHS and HUD are also considering a variety of complimentary new initiatives to build on CDC’s work in order to better integrate all of the HIV resources within a community. This project has relevance not only for these communities, which are responsible for roughly 44% of the epidemic in the US, but it will teach us valuable lessons to be applied to our collective work with other states and jurisdictions across the country. Private sector partners can support this effort many ways, such as helping community-based partners engage with local government partners on this initiative, coordinating current and new prevention and care efforts in these communities, partnering on outreach efforts, and conducting evaluations and efforts to transfer lessons so that other areas of the country can benefit from the experiences in these high prevalence jurisdictions. This will also compliment other work of the private sector in responding to high levels of unmet need in other communities, such as in the South. The National HIV/AIDS Strategy provides a moment of opportunity to make big things happen. Business and labor partners, foundations, and other charitable organizations have long made critically important contributions to support individuals and communities affected by HIV/AIDS, often by working with governments to test new ideas or expand successful programs. Over the coming months, the Administration will be looking for opportunities to partner with the private sector to achieve the goals of the National HIV/AIDS Strategy. So, we want to hear from you – the innovative leaders in this space who are undertaking new initiatives to support the implementation of the National HIV/AIDS Strategy. Tell us about your successful partnerships and new ideas for working together at AIDSpolicy@who.eop.gov.
Melody C. Barnes is an Assistant to the President and Director of the Domestic Policy Council
Hernan Molina, who is HIV-positive, is deputy to West Hollywood Mayor Pro Tem John J. Duran and independently blogs on policy issues for LGBT POV.