The ADAP Crisis: Waiting for Meds
Fighting for Funding
HIV advocates constantly monitor the health of ADAPs and mobilize when access is threatened, at both the state and national level. Advocacy can take many forms and have varied goals, ranging from a national solution to the ADAP crisis to brokering stopgap measures.
The ADAP Coalition brings together national HIV advocacy organizations and drug manufacturers to work together for increased federal funding of ADAPs. These efforts had significant success from 1996 to 2002, but since then advocates have been unable to persuade Congress or the President to provide increases that meet the growing demand. This work has kept ADAP in the spotlight, however, and provided some increased funding, even when other health programs were flat-funded. In the summer of 2010, as ADAP waiting lists grew, President Obama redirected $25 million to ADAPs in crisis. This led to hundreds of clients being removed from waiting lists, but the amount was inadequate and waiting lists have rapidly grown.
The Fair Pricing Coalition (FPC) is a group of community treatment activists advocating for fair and sustainable pricing of HIV and hepatitis drugs in the U.S. The FPC also works with drug companies to ensure that adequate co-pay and patient assistance programs are in place. In January, the FPC brokered agreements that will allow approximately 6,500 Floridians to continue to receive their HIV medications during that state's budget crisis. Florida's ADAP was expected to exhaust all available funds and shut down in early February if an emergency solution was not found. The agreement between Welvista (a non-profit pharmacy), drug companies, and Florida's ADAP provided uninterrupted medications to 6,500 people, who switched to Welvista until April 1, 2011, when new federal ADAP funds became available. The transfer enabled Florida's ADAP to provide drugs to its remaining 3,500 clients for the rest of the fiscal year.
A strong and well organized advocacy effort was initiated in California in October 2009, which was able to turn back a proposed devastating reduction in state funding in the state's ADAP. Despite California's overwhelming fiscal crisis, $56 million in new state funds were appropriated for ADAP. In North Carolina, a similar grassroots effort resulted in an increase of $15 million. In New Jersey, advocacy reversed the governor's plan to remove 500 clients from ADAP. On the other hand, South Carolina reduced ADAP funding by 60% in 2010, and Minnesota's 2009 contribution of $4.5 million was eliminated in 2010. Despite budget deficits estimated to be more than $142 billion, state governments generally responded generously to the ADAP crisis, increasing the national state contribution level to $346 million, a 57% increase from 2009 to 2010. As shown by the setbacks in Minnesota and South Carolina, however, advocacy efforts must never be allowed to rest on past successes.
The Politics of ADAP
The recession and the 2010 elections turned the tone of political discourse very nasty. Radio and television pundits railed against government spending and taxes, vilifying government programs that serve the needy. Many of those who escaped the worst impacts of the recession are still suffering from financial anxiety and have turned to a political ideology that puts self-interest ahead of the general good and the needs of those less fortunate. Racism, bigotry, and homophobia are increasingly being exploited for political gain and are reflected in calls for devastating budget cuts to health and human services for low income and minority populations.
This political environment may seem overwhelming, but the HIV community must continue to advocate for essential care and services. Advocates must become more effective in their tactics and stand united against those who would slash and burn public health programs like ADAP. The HIV community can assist in efforts to keep ADAPs open by becoming involved with local AIDS service and advocacy organizations. These organizations must keep local communities informed about the status of their state ADAP and find ways to work with others to increase ADAP resources. Letter-writing campaigns and visits to elected officials make a real difference in funding levels, and coordinated efforts have the most impact.
On an individual level, if someone needs access to HIV medications he or she should apply to ADAP, even if there is a waiting list. While the idea of being on a list can be discouraging, it documents the need for additional funding and will position the person for eventual enrollment. The application process should bring a referral to an AIDS service organization and a case manager to help with applying to PAPs for medications. These programs can provide support and access to other services, as well as opportunities to participate in advocacy efforts.
Lanny Cross served as the NYS ADAP program director for 15 years and is a consultant on ADAP issues to state and national organizations.
This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
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