During his 2008 Presidential campaign, Barack Obama stated, "If elected, during my first year in office, I will develop and implement a comprehensive National HIV/AIDS Strategy (NHAS) that includes all federal agencies." He continued, "That strategy will reduce HIV infections, increase access to care and reduce HIV-related health disparities." But with still no word on the matter after the first 100 days of his presidency, advocates soon took to the streets to pressure Obama to make good on his promise.
Well, he has, with the July 14 release of the final strategy and implementation plan for tackling the domestic HIV/AIDS crisis. Although members of the HIV/AIDS community had much to celebrate on Tuesday, many remained frustrated that the plan took so long to pull together and fell so far short on adequately addressing some of the most urgent HIV/AIDS treatment and prevention needs that America now faces.
A year ago I sat across the table from Jeffrey Crowley, the newly minted Director of the Office of National AIDS Policy (ONAP) charged with the daunting task of spearheading the creation of the National HIV/AIDS Strategy (NHAD). Crowley listened while my HIV Policy class presented him with our ideas on how we thought the plan should be structured.
At the time he was saddled with this tremendous responsibility, he was still sorely under-staffed at ONAP and already behind schedule according to many community advocates who had waited years for such a plan; so it's a wonder that in just over a year he and his team were able to synthesize such a thorough and comprehensive strategy and implementation plan. And for rising to that challenge, they should be commended.
This undertaking marks the first successful attempt at such a national strategy, after previous failures and false starts. The most recent attempt under the Clinton administration failed to be implemented and went largely unnoticed by much of the community. As a result, this time around, Crowley was able to build on the lessons learned from the past as well as from the President's Emergency Plan For AIDS Relief (PEPFAR). In particular, this time ONAP went into the community to ask the front-line advocates, service providers, and HIV-positive individuals their thoughts on what the strategy should include. Undoubtedly, this open-community process helped to establish the buy-in needed for this strategy to come to fruition and for people to actually pay attention to it.
Thus, having met a key "ask" of HIV/AIDS advocates during the 2008 presidential campaign by successfully raising the profile of HIV/AIDS on the national stage, the foundation to make some significant inroads into the fight against this epidemic has been laid, that is, assuming that we get the implementation right.
The Current State of the HIV/AIDS Crisis
Although tremendous headway was made on the domestic fight against HIV/AIDS in the early 1990s, we have backslid terribly in the past decade. Currently, more than 1.1 million Americans are HIV positive, a prevalence that will continue to grow as long as our incidence holds steady at an estimated 56,000 new infections per year.
On Tuesday, HHS Secretary Kathleen Sebelius noted, "We're merely keeping pace, when we should be gaining ground." For in some US cities, she noted, it is estimated that "nearly half of gay African-American men are HIV positive," a population at the nexus of the racial and LGBT-health disparities that have allowed the epidemic expand, unabated in these communities, for the past three decades.
The NHAS sets three goals that hinge on the key elements of prevention, treatment, and equitable access to quality care:
Reduce new HIV infections;
Increase access to care for people living with HIV/AIDS and optimize health outcomes; and
Reduce HIV-related health disparities.
All of these goals combine in effort to achieve the Vision of the NHAS:
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 NHAS also addresses social factors like stigma and discrimination that lead to poor health outcomes and increased risk of infection. Thus, with concrete goals, timelines, measurable outcomes and a clear vision as a guide, the real work now begins.
The Community's Initial Response
Tuesday's jubilant press conference was tempered by some advocates' frustrations with a strategy that they feel has no financial teeth and does not go far enough to address some of the community's most pressing concerns. Moreover, the Administration's goal of reducing the annual number of new HIV infections by 25 percent within the next five years has been deemed too conservative by critics who also claim the timetables should be far more aggressive.
Crowley countered these claims by saying that in the past, goals were far too unrealistic, and that a 25 percent reduction is a far more obtainable. Regardless, others contend that setting such benchmarks is moot, since at this point we still do not have the reliable metrics, data capacity and an epidemiological infrastructure to accurately gauge and monitor progress in a meaningful way that permits us to adjust our response to this rapidly evolving epidemic.
Aside from these criticisms, the general consensus within the HIV/AIDS community appears to be that the strategy is fine, but that the implementation plan could be much more robust. Although the NHAS calls for a more coordinated, multilateral response from all levels of the private and non-profit sectors and across government agencies, to align resources, streamline processes, and focus attention on populations of greatest need and issues of most importance, none of this can happen if organizations are not funded to begin with.
Although most of the HIV/AIDS community seems to have gotten on board with the NHAS, and feels that its release is certainly a positive sign, many are incensed that we have required so many other countries to have a similar strategy as a prerequisite to apply for PEPFAR funds, when we have not had one until now. Even worse, in order to receive funds, we also required these same countries to demonstrate that at least a third of their prevention programing adhered to Republican-influenced, unscientific abstinence-only interventions.
These same vestiges of the Jesse Helms-era are finally starting to dissipate in this country, largely through recent legislative developments (i.e. the end to the ban on federal funding for syringe exchange programs and increased youth access to condoms) and the NHAS's explicit support of using only evidence-based medical and public health interventions in the future.
Still, translation of this evidence into future policy around HIV/AIDS prevention and treatment will require an unusually frank, especially for the government, assessment of existing policies and programs and how they must be changed to adopt more scientifically rigorous, harm reduction-based approaches - a philosophy not too popular with political conservatives, despite what the science says.
This is particularly important in prevention, if we are ever to provide people with the supplies they need to protect themselves, whether they be condoms or clean needles for injection drug use. As such, the first wave of $30 million in funding announced by Secretary Sebelius, is to be designated for prevention efforts carried out by clinics and other health service and prevention organizations in communities most in need.
What the NHAS Means for the LGBT Community
In addressing the first of the three goals outlined by the NHAS, reducing new HIV infections, gay and bisexual men are identified as the population at highest risk of infection, to which the nation must "re-orient [its] efforts by giving much more attention and resources" to stem the spread of the disease within this community. This past March, the CDC released its first baseline estimates of the size of MSM population, finally giving gay and bisexual (or technically "men who have sex with men") a denominator, by which to compare HIV rates to other populations.
Alarmingly, gay men are believed to comprise approximately 2 percent of the U.S. population, yet account for 53 percent of new HIV infections. In 2006, white gay men still lead the pack, with an estimated incidence of 13,230 new infections per year. Although there were fewer new infections for Black (10,130) and Latino (5,710) gay men, they continue to bear a far more disproportionate risk of infection, with their rates growing most rapidly. To put these figures into perspective, men who have sex with men (MSM) in America are at 44 to 86 times more at risk of becoming infected with HIV than their heterosexual counterparts, and have 40 to 77 times the risk of women. Further sobering statistics reveal:
Gay and bisexual men of all races are the only group in the United States where the estimated number of new HIV infections is rising annually.
High rates of HIV among gay men are found not only in large urban areas. More than half of all AIDS cases diagnosed in the United States are among gay and bisexual men irrespective of town or city size.
Due largely to a total lack of past prevention and treatment efforts targeting transgender individuals, this group is also at terribly high risk for HIV infection, with studies estimating HIV prevalence within the transgender population to be 30 percent.
Of note, has been the administration's refreshingly frank acknowledgment of how the epidemic has disproportionately impacted the "gay and bisexual" community in the past, in part due to governmental inaction. Such statements are a far cry from the Reagan administration's refusal to even mention the word AIDS until 1987, after tens of thousands of largely gay men already had died. In contrast, with this administration the Assistant HHS Secretary, Dr. Howard Koh, responsible for implementing the NHAS, mentioned on Tuesday plans to "initiate consultations with LGBT leaders to continue to advance health promotion" in the area of HIV/AIDS.
Nonetheless, it is also worth considering whether ulterior motives might be playing a role in how the administration has handled the LGBT community through the release of the NHAS. In both a recent New York Times and Washington Post article, the NHAS was curiously billed as a victory for gay rights, amidst pressure from the LGBT community to repeal DADT.
According to these articles, it seems possible that the administration is using the issue of HIV/AIDS to say that the White House is paying greater attention to gay rights issues, when, in reality, the strategy is more a product of HIV/AIDS organizations dating back to 2007 than of any collective LGBT process. In truth, many HIV/AIDS organizations have had to push to keep LGBT groups more engaged on the NHAS, while so many other LGBT rights issues have distracted them from the topic in recent years.
Although the LGBT community will always remain inextricably tied to the destiny of the HIV/AIDS epidemic, the danger in the Administration's characterization of the NHAS as a win for LGBT rights is that it risks reducing the our community's health care "asks" to solely focus on HIV/AIDS, when in fact, a plethora of other health care disparities plague our community far beyond the scope of this crisis.
In particular, our mental health and substance abuse services are tragically insufficient, compounded by dramatically higher risk of tobacco and alcohol use and reduced access to sensitive primary care. Additionally, transgender health issues have been neglected to an embarrassing degree in this country; not to mention that we are not even being appropriately counted in our health care statistics.
Given the level of effort that has been made within the gay community over the years to stem the spread of this disease, the data on MSM incidence for HIV is tragic and depressing. Moreover, it suggests a need not just for a realignment of resources to target efforts with this population, but also a need to rethink our strategies and begin to assess the structural and social changes that will be needed to achieve long-term behavior change in this community. New and creative interventions must be explored for our community, which has been blasted into submission by so many safer sex messages over the years, that "prevention fatigue" has become just as pervasive among gay men as the disease, itself.
Show Me the Money
Finally, it is worth repeating that the chief concern of the HIV/AIDS community is that without new financial resources being identified, many are left quite skeptical about its successful implementation, especially considering the tough fiscal times we now face.
The administration somewhat side-steps this matter by underscoring the need to first refine current policies, making the HIV/AIDS treatment and prevention enterprise far more efficient and cost-effective, with scarce funds made available to populations in which the disease is emerging or spreading most rapidly. Although this approach is necessary for a robust and sustainable plan, it does little to address many of the urgent shortfalls we currently faces in the way of treatment, manifested by numerous wait-lists for ADAP and housing assistance that have recently sprung up throughout the country.
Earlier this year, South Carolina cut all of its ADAP funding, while North Carolina continues to maintain the longest wait-list for HIV drug assistance in the country, boasting more than 800 of the nearly 2,300 people currently waiting. With the economic downturn, states have increasingly been forced to cut their contributions to the program as the number of people seeking government assistance continues to climb. As such, the wait-list figure is expected to balloon in the near future, with an estimated 300 people being added per month, in Florida alone.
Although Secretary Sebelius has promised $25 million in emergency funding to cover these shortfalls, advocates claim that this sum will only provide for one-fifth of the estimated $126 million needed to cover all of those on wait-lists at present. Despite anticipated future Medicaid expansions that will help to cover much of ADAP needs, most of these changes will not take place until 2014, requiring some other source funding to bridge the gap in the meantime.
Charles King, Director of Housing Works, expressed great frustration at the NHAS, calling it a "step backwards" for its failure to sufficiently address the urgent drug assistance and housing shortfalls. Studies have shown that insufficient housing for HIV positive individuals is one of the most significant indicators of poor health outcomes, and the situation must be addressed now, before it gets much worse. Currently in Washington, DC, the wait-list is more than 700 people long.
Learning from PEPFAR
In the late 1990s the United States government was lambasted by the HIV/AIDS community for giving pennies to the international HIV/AIDS crisis, to the tune of several hundred million dollars in international aid, when the need was on a scale of orders of magnitude greater. When I met with a foreign affairs staffer of Senator Jesse Helms in early 2001, he said the Senator staunchly opposed increased funding on the grounds that it would not do any good and would be largely wasted in countries with such poor medical infrastructure and corrupt governments. Then Bono, of U2 fame, met with the him and spoke of the thousands of innocent orphans dying each day in Africa, and suddenly the Senator had a change of heart.
With the Senator's support and blessing, George W. Bush, soon announced the beginning of PEPFAR, which has become a sterling example of how to appropriately scale-up funding for treatment and prevention efforts in resource poor environments. Considering the comparative wealth of resources and infrastructure we already have here, I am confident that similar successes could be realized in no time in the US, if we are only more generous with our funds and wise about how we spend our money.
Although the NHAS directs the State Department to report on best practices from PEPFAR within the next 150 days to inform its efficient and timely implementation, it fails to recognize the most obvious lesson learned from the past decade of ramping up PEPFAR around the world: It was not until the US government really put some skin in the game through an investment of billions of dollars that soon became a commitment of $15 billion over five years, combined with a methodical development of infrastructure in tandem with the growing infusion of aid, that the international community seriously joined in the effort. Similarly, the government could play a similar role in kick-starting the investment into its own NHAS.
The Path Forward
The NHAS is a significant milestone in the history of the epidemic not only for its attempt to marshal our country's collective efforts and resources to finally turn the tide on this damned disease, but also in its symbolism as a plan of common purpose. HIV/AIDS divides and conquers communities. It thrives on the infighting created by pitting us against each other as we vie for limited resources and attention.
Moreover, the history of the epidemic is replete with instances in which the responsibility for the disease was placed on one group or the other. HIV/AIDS is a "gay disease," a "Haitian disease," a "disease of drug users and prostitutes," a "black disease," an "African disease," were the epithets that marked the spread of the epidemic throughout the earth, as the blame was shifted from one group to the next, instilling a sense of complacency in others until it was their turn to bear the blame.
At this pivotal juncture in the history of HIV/AIDS, it would serve us well to remember the words of William Budd, a seventeenth century English physician and contemporary of John Snow, the famed the father of epidemiology, credited with halting London's 1848 cholera epidemic by removing the handle of the Broad Street pump. Budd's work with the poor who suffered most from cholera gave him an appreciation of how inequities in access to health care, wealth and other social disparities impact the health of all of society.
By reason of our common humanity, we are all more nearly related here than we are apt to think. The members of the great human family are, in fact, bound together by a thousand secret ties, of whose existence the world in general little dreams. And he that was never yet connected with his poorer neighbor by deeds of Charity or Love, may one day find, when it is too late, that he is connected with him by a bond which may bring them both, at once, to a common grave.
Our public health is a common good, and the more we allow the disease to divide us by placing the blame elsewhere or by insisting our community is not being provided for without serving as a bridge to those same people in need, the more ground we will continue to lose to this disease. The NHAS attempts to create a level playing field and organize our efforts around a common purpose on which we more or less agree. Thus, now as we are connected in death due to HIV/AIDS, so will we be connected in life.
We a have a plan, and now we must put it into action.