During the intense health care reform debate President Obama occasionally mentioned HIV infections and AIDS-related illnesses as among those pre-existing conditions that could no longer be used by health insurance companies to automatically exclude consumers from health insurance coverage. Yet the broader scope and crisis of the HIV and AIDS epidemic in America failed to garner much attention.
Some HIV and AIDS activists and healthcare providers, meanwhile, are experiencing that crisis as if it were the early 1980s when the Reagan administration expressed little concern about the early AIDS epidemic even as the death toll mounted.
Since 2007, activists have clamored for a national strategy on AIDS. And now they are pleading for emergency help as the economic downturn forces drastic cuts in the budgets of non-profit AIDS organizations while new HIV infection rates rise and more people need services.
Where is the sense of urgency in the Obama White House to manage the confusion and handle the crisis, they ask?
In 2006, candidate Obama seemed to understand the need for urgency calling for "an all-hands-on-deck effort." The first priority of the candidate's HIV and AIDS platform was to develop a national HIV/AIDS strategy "in the first year of his presidency," a strategy "designed to reduce HIV infections, increase access to care, and reduce HIV-related health disparities" with "measurable goals, timelines, and accountability mechanisms."
President Obama outlined the scope of the crisis on the front page of the National Office of AIDS Policy (ONAP) website: "When one of our fellow citizens becomes infected with HIV every nine-and-a half minutes, (emphasis added) the epidemic affects all Americans."
NOAP recently stressed the impact of HIV on women:
The statistics are sobering: Every 35 minutes, a woman tests positive for HIV in the United States. While women in the U.S. represented 8 percent of AIDS diagnoses in the 1980's, they now account for 27 percent. The HIV epidemic in the U.S. disproportionately impacts women of color: HIV/AIDS is one of the leading causes of death among black women and Latinas.
The demographic disparities of AIDS cases (as of 2007) are dramatic: Whites, who make up 66 percent of the population, account for 30 percent of AIDS cases; Blacks/African Americans, 12 percent of the population, account for 49 percent of AIDS cases; Hispanic/Latino, 15 percent of the population, account for 19 percent of AIDS cases. Asians, American Indians/Alaska Native and Native Hawaiian/Other Pacific account for less than one percent of the AIDS cases.
The CDC statistics for men who have sex with men (MSM) are alarming. Though only an estimated 4 percent of the U.S. male population (ages 13 and older), MSMs account for nearly half (48 percent) of the more than one million people living with HIV and more than half (53 percent) of all new HIV infections each year. The CDC reports that new infections have declined among heterosexuals and injection drug users, but the "annual number of new HIV infections among MSM has been steadily increasing since the early 1990s," which the CDC attributes to complacency resulting from the availability of antiretroviral treatment and reduced use of condoms. (See CDC Surveillance breakdown here).
But the headline-grabbing news came in August 2008 when the CDC discovered they had been underreporting the annual rate of new HIV infections. They estimated that there were approximately 56,300 new HIV infections in 2006, about 40 percent higher than the 40,000 new infections per year the CDC previously reported.
Dr. Kevin Fenton, director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention, made it clear that the new estimate did not represent an actual increase in the number of new HIV infections, but resulted from more sophisticated monitoring systems.
Richard Wolitski, then-acting director of the CDC's division of HIV/AIDS prevention, said the new estimates "reveal that the U.S. epidemic is -- and has been -- worse than previously estimated and serve as a wake-up call for all Americans."
But the wake up call has been largely ignored, according to a survey released by the Kaiser Family Foundation in April 2009. That study found that "Americans' sense of urgency about HIV/AIDS as a national health problem has fallen dramatically," as had concern for personal risk of HIV infection.
More than 1 in 30 adults in Washington, D.C., are HIV-infected-a prevalence higher than that reported in Ethiopia, Nigeria, or Rwanda. Certain U.S. subpopulations are particularly hard hit. In New York City, 1 in 40 blacks, 1 in 10 men who have sex with men, and 1 in 8 injection-drug users are HIV-infected, as are 1 in 16 black men in Washington, D.C. In several U.S. urban areas, the HIV prevalence among men who have sex with men is as high as 30 percent-as compared with a general-population prevalence of 7.8 percent in Kenya and 16.9 percent in South Africa.
Additionally, "more than 20 percent of the estimated 1 million HIV-positive Americans are unaware of their status." Newsweek concluded: "It's time to admit that HIV is still a major threat to Americans."
Last April, NOAP launched a new five year AIDS Awareness campaign and on April 1 the CDC announced an expansion of their HIV testing initiative by $31.5 million, for another three years to approximately $142.5 million over all. The CDC said they tested over 1.4 million Americans since the initiative began in 2007, with more than 10,000 people newly diagnosed with HIV and "the vast majority" linked to care.
There are other signs the Obama administration is trying to respond to the crisis. This February, the White House released its proposed budget for fiscal year 2011 with increases for domestic HIV and AIDS programs. The total U.S. government-wide spending on HIV and AIDS would increase from $26 billion to $27 billion and the total discretionary funding for the Department of Health and Human Services spending on HIV and AIDS would increase from $6.9 billion to $7.1 billion in 2011. The funding calls for an expansion and focus on treatment, care and prevention "consistent with the President's pledge to develop a National HIV/AIDS Strategy." In addition to funding for HIV testing, the budget proposes funding for collaborative efforts to help people with HIV with co-infections of tuberculosis, hepatitis, and sexually transmitted diseases.
The budget proposal also calls for:
- $40 million increase in funding for the Ryan White HIV/AIDS Program for care and treatment programs to a total of $2.3 billion, of which $679 million is for Ryan White Part A medical and support services in eligible metropolitan areas and transitional grant areas and $855 million is for the AIDS Drug Assistance Program - an increase of $20 million;
- an increase of $37.9 million for prevention at the CDC;
- a $98.7 million increase for the National Institutes of Health for research for a total of $3.2 billion in 2011.
Obama also proposes a $5 million increase to $340 million for the Housing and Urban Development (HUD) Housing Opportunities for Persons with AIDS (HOPWA) program and a request (emphasis added) for $19 billion for the Housing Choice Voucher program to help more than two million extremely low- to low- income families with rental assistance. Obama's budget also includes $117 million for the Substance Abuse and Mental Health Services Administration Budget.
There has also been some movement on the development of a national strategy on AIDS. The White House convened three consultations plus an inter-agency meeting which is posted online -- and ONAP held 14 community meetings with the intention of presenting the national strategy on AIDS by June.
On Friday, (April 9), ONAP released a summary of those meetings and online suggestions in a report, Community Ideas for Improving the Response to the Domestic HIV Epidemic, which cites "a core set of common themes...including: improving access to care, reducing stigma surrounding HIV, and coordinating HIV prevention and treatment." ONAP Director Jeffrey S. Crowley said he hopes the report "will serve as a resource as we strive to develop a new strategic approach to tackling the HIV/AIDS epidemic in the United States and take steps to better coordinate the federal government's response."
But Obama's budget has yet to be approved by Congress and many AIDS activists are frustrated that there is still no overall coordinated AIDS strategy. Crowley promised a plan by the end of 2009 but instead issued a "Call to Action" that appeared to go largely unheeded.
The Coalition for a National AIDS Strategy issued its own call and came up with its own set of recommendations for a strategy. Jeffrey King, executive director of In The Meantime Men, an HIV-focused wellness group for African American MSMs, said the community meeting in Los Angeles occurred on the same Sunday as AIDS Project Los Angele's popular AIDS Walk. King said only about 100 people attended, many of whom were from an HIV housing facility begging for help not to be closed. It closed anyway.
King said he is trying to keep his small agency afloat during the economic downturn. But finding funding is difficult and the director of the California Office of AIDS plays politics with funding grants, he said. The L.A. County Office of AIDS Programs and Policy has been very helpful, however.
Pedro García, director of Youth Services & Proyecto Orgullo at BIENESTAR, a grass-roots Latino-oriented non-profit that helps underserved communities of color disproportionately impacted by HIV/AIDS (including straight and LGBTs immigrants and a large transgender cliental) said his organization is also facing financial difficulties.
"The cuts in funding that took place last year impacted BIENESTAR heavily. We lost complete funding for the Youth Program from the [LA County] Office of AIDS Programs and Policy. We also were heavily impacted in cuts for Care Services programs such as Case Management, Peer Support, Treatment Education and Housing, to name a few. And in addition, BIENESTAR currently has NO funding for Latina Women at Sexual Risk - however, services for this population have not been interrupted. This is the type of commitment that BIENESTAR has toward the Latino Community."
"What this decreased funding for programs and services translates to is more cases of HIV infection occurring in the Latino population and making the work that BIENESTAR does, that much harder to achieve," said Oscar De La O, Executive Director of BIENESTAR.
Ronald Johnson, the African American HIV-positive deputy director of AIDS Action Council, countered the prevailing perception.
"Actually there is a sense of real urgency within the White House both by the President and the National Office of AIDS Policy," Johnson said. "I realize its taking longer than some of us thought to see a draft [of the Strategy] but it's our understanding that the draft is underway and I think any delay - and certainly the focus on health care reform - which benefits people living with HIV/AIDS - is a factor."
Johnson said that evidence of the urgency is in the sheer amount of work the White House is doing to reverse "eight years of absolute neglect of the domestic HIV epidemic from the previous administration."
He noted that for the first time, the CDC is funding prevention messages that target MSM and the new national surveillance system resulted in the revised estimates of new HIV infections each year.
Further evidence might be the April 5 announcement by Health and Human Services Secretary Kathleen Sebelius of the release of more than $1.84 billion in grants though Health Resources and Services Administration, which oversees the Ryan White HIV/AIDS program.
"These grants help ensure Americans, especially those in underserved rural and urban communities, affected by HIV/AIDS get access to the care they need through quality health care and support systems," Sebelius said in a press release.
The grants are allocated in three areas of the Ryan White program: Part B gets about $1.145 billion sent to states and territories, with $800 million of that total designated for ADAP, with other money going to 16 states based on a formula (list of Part B awards here). Part A gets $652 million for primary care and support services, including $44.8 million for the Minority AIDS Initiative and Part C receives more than $48.1 million for early intervention services administered by community-based organizations.
But Michael Weinstein, president of the Los Angeles-based global treatment and advocacy AIDS Healthcare Foundation is not overly impressed. "The combination of flat funding and steep drug price rises has put the ADAP program in great jeopardy," Weinstein said. "We should be able to expect something much better from the Democrats on AIDS."
Johnson said AIDS Action Council and other AIDS groups are gearing up for the expected budget fight as Congress takes up appropriations. "We are going to press the case that even though there are increases in the president's budget, the need and the epidemic are such that even greater funds are called for."
But an even larger issue looms: figuring out how to integrate the AIDS appropriations into the National AIDS Strategy - overlayed with the new heath care reform bill, which Johnson said they are still reading, with its implementation "down the road. That is the work we are doing now." For instance, the health care reform bill eliminates the coverage cap - otherwise known as the "hole in the donut" for Medicare Part D Prescription drugs by 2020. While non-HIV infected Americans who need prescription medications may have difficultly deciphering the year changes in the plan, for people living with HIV and AIDS the issue is expensive and could mean life or death.
"We're still asking ourselves what this means," Johnson said. Immediately, some people will be eligible for a $250 rebate. "It's small but in these times, every 50 cents helps for some people," especially since many people living with AIDS are not able to get out of the donut hole. In 2011, the 50 percent discount for name brand drugs will go into effect for people in the coverage gap.
"People living with HIV/AIDS can use ADAP to count for the true out of pocket expenses requirement," Johnson said. But reminded that many state ADAPs are in danger of being cut for lack of funding, Johnson said, "above and beyond health care reform, we've strongly advocated for a $126 million emergency appropriations for ADAP this year and also for the appropriations bills that Congress will be developing for the fiscal year that begins October 1. The funding situation for ADAP continues to be a critical issue."
With rising HIV infection rates, with budget shortfalls severely impacting the local service agencies at a time when more services are needed, with state governments cutting funding to deal with their own financial woes, and with a lack of an overall emergency strategy - the day may soon come when AIDS activists will no longer feel as if they were living in the early 1980s - they may actually be reliving them.