With a president who has declared the end of AIDS is in reach, Dr. Grant Colfax has a massive job in front of him. But his first interview with BTL and The American Independent has some activists challenging his take on controversial elements of the epidemic impacting an estimated 1.2 million Americans.
The former director of the San Francisco Department of Public Health HIV programs was appointed by President Barack Obama to run the Office of National AIDS Policy March 14.
In a brief phone interview, Colfax praised the National HIV/AIDS Strategy and said he was looking forward to implementing the plan. NHAS was released by the Obama administration in July of 2010 and is the first time in the 30-year history of the epidemic that the federal government has developed a comprehensive plan to address HIV in the United States.
A key segment of the plan calls for addressing HIV-related stigma and discrimination, including addressing the bevy of HIV-specific criminal state laws that activists have identified as stigmatizing.
“Certainly, criminalization is one of the issues we’ll be looking at as we engage stakeholders in a broader conversation about how stigma and discrimination are contributing to HIV risk and core health outcomes,” Colfax said.
Asked what his personal take on criminalization and its impact on the HIV epidemic was, Colfax demurred.
“I think it’s really premature for me to speak specifically about that beyond what I just said,” he said.
That response did not sit will with activists.
“Dr. Colfax’s boiler-plate reaction to the criminalization issue is disappointing,” said Catherine Hanssens, executive director of the Center for HIV Law and Policy, which houses the anti-HIV criminalization group Positive Justice Project. “Prosecuting and incarcerating people with HIV for years and decades for consensual and no-risk conduct is a profoundly serious form of discrimination that has been stigmatizing people with HIV for decades.”
Sean Strub, a board member for the Global Network of People with HIV- North America, was also disappointed.
“To have any discussion about stigma that doesn’t start with removing HIV-specific criminal statutes is hollow,” Strub said. “Those statutes, which create a viral underclass, are the most extreme manifestation of stigma.”
Rod McCullom, a journalist and advocate covering HIV LGBT issues nationally and internationally, was also put off by Colfax’s responses on criminalization questions.
“Dr. Colfax probably can’t give a full throttle endorsement for legislation such as the the REPEAL HIV Discrimination Act (federal legislation that would encourage states to address HIV-specific criminal laws). But clearly stigma remains high and people are randomly singled out for prosecution,” says McCullom, adding that he believes gays and people of color are more often the target of the enforcement of those laws.
McCullom pointed to the 2010 bio-terorrism case against Michigan man Daniel Allen. Allen, who is HIV-positive, was charged with bio-terrorism for allegedly biting a neighbor during a fight. Allen maintains that he was defending himself against a brutal gay bashing. The charges were dismissed by a circuit court judge.
Hanssens said that rolling back the negative impact of criminalization is going to require “federal leadership.”
“Yes, ONAP should be playing an active role in engaging stakeholders on this very issue, but I also hope this office also will play a more active role in engaging the responsible federal agencies who have not yet met their obligations for assessment and recommendations that were due the end of last year,” she said, referring the NHAS implementation plan.
ONAP spokesperson Shannon Gibson did not return inquiries about the status of the implementation and concerns raised by Hanssens.
Medication as prevention
Colfax has been instrumental in driving “science-based” programs in San Francisco, including implementing a study on Pre-Exposure Prophylaxis. PrEP is the daily use of the power antiretorviral medications by those who are not infected with HIV to prevent infection. Currently, the Centers for Disease Control and Prevention in Atlanta have authorized the intervention only for men who have sex with men, based on a study known as iPrEx.
While the study showed the intervention was effective, Colfax says the jury is still out.
“What is the real response to even being offered PrEP within the MSM community?” Colfax said. “We’re still waiting to see what the results of those implementation research studies (funded by NIH at trial locations in Miami and San Francisco) show to make further decisions about what we need to do regarding PrEP.”
Colfax said that understanding the effectiveness of both PrEP and non-occupational post exposure prophylaxis (n-PEP) – the use of anti-HIV drugs following an exposure to prevent infection – are key pieces to the “puzzle” of delivering health care options to people living with HIV or at risk for HIV.
“The point here is, the science is driving our approach,” Colfax says. “We’ll be continuing to specifically add the potential for biomedical interventions as well as the behavioral side interventions. How do these pieces fit together in terms of a combination of prevention approaches in terms of comprehensive care applications for people at risk for, and living with, HIV. It’s part of the implementation dialog that we’re going to continue as we move forward at ONAP and even for leading the administration’s domestic approach.”
ADAP funding crisis
While preventive use of antiretorvirals remains an up-in-the-air question, more and more science is showing access to and use of the medications for those infected with the virus leads to healthier outcomes. One of the key findings is that successful antiretroviral medication regimes reduce the infectiousness of persons with HIV by decreasing the viral load – a measure of free virus in the blood.
The federally driven program designed to make those expensive medications available to people living with HIV is struggling. The AIDS Drug Assistance Program (ADAP) continues to see thousands of people on waiting lists to access the life-saving drugs.
Colfax said the Obama administration has proposed an increase of $800 million in care, prevention and treatment money in the upcoming budget. He said that should help reduce the waiting lists.
“The amount going to ADAP certainly reflects the federal share of reducing if not eliminating those ADAP lists,” Colfax says. “I think the question is how can we continue to work with states to make sure they step up and contribute the appropriate amount?”
The ADAP Advocacy Association reports that 3,840 people in 11 states are still waiting for access to medications. Many of those people live in the southern United States, which has been hard hit by the epidemic.
Colfax was asked if the issue of ADAP funding on a state level was a matter of state lawmakers prioritizing funding for the program or if it was a side effect of the economic crisis in the United States.
Gibson, the ONAP spokesperson sitting in on the interview, cut Colfax off before he could answer.
“I think that’s a question for the states,” she said. “I think that’s hard for Grant to weigh in there.”
Advocates say the funding crisis is a combination of issues.
“There is no silver bullet, but rather a convergence of issues that has led to crisis, including both the state prioritization and economic down-turn, but also increased demand on the system, as well as lagging federal appropriations,” explained Brandon Macsata, CEO of the ADAP Advocacy Association. “ADAP budgets have seen the federal commitment as a percentage decline from approximately 74 percent in 2005 to less than 50 percent in 2011.”
Peter Kronenberg, spokesperson for the National Association of People With AIDS, says appropriate funding of ADAP is key in addressing the HIV epidemic.
“The cost of not getting HAART (Highly Active Antiretroviral Treatment) drugs to everyone who needs them – higher individual care costs as people progress needlessly to full-blown AIDS, and the cost of new infections that might never have happened if the people on the waiting lists had had drugs – is so much higher than the cost of providing drugs, that it’s almost irrelevant who pays for them,” Kronenberg says. “It’s more important that someone pay for them. Georgia’s 2012 state budget will be in the neighborhood of $16 billion dollars. If it takes $30 million to eliminate Georgia’s ADAP waiting list, that’s two-tenths of one percent of the total – no budget buster, and it would save the state money in the not so long run. The same argument applies at the federal level. The money it would take to fully fund the ADAPs is a drop in the bucket and earns itself back in a very few years in HIV costs avoided. Someone needs to belly up to the bar, and Georgia’s and Virginia’s short-sightedness may be a good argument for federalizing the whole program. This is an election year, though, and we’d be surprised to hear the Administration say that until after the votes are in,” said Kronenberg.
Test and Treat
In addition to access to the medications as a key health issue in relation to the epidemic, activists raise concerns about a program called test and treat. Under this program, persons who test positive for HIV are immediately put on medications. Activists, like Strub, say this is a troublesome scenario, because some people newly diagnosed with HIV are not clinically in a position to require medications. However, Strub argues, a form of coercion is created.
Colfax said coercion “is off the table. Everybody’s talking about voluntary access to health care.”
“In terms of test and treat, he dismissed the prospect of coercion like it wasn’t even a concern. That’s disturbing,” said Strub. “There is a ton of anecdotal evidence that people with HIV with high CD4 (a key immune system blood cell the virus attacks) counts are being pressured to start treatment. Sometimes it is implied that they must make such a decision with great urgency when no such urgency truly exists. People sometimes feel like they must take antiretroviral therapy in order to access other services. They get incomplete or misleading information. If they stop taking their treatment, they are treated practically like criminals. They are frequently not told that the science is unclear as to whether there is a net benefit to the person if their CD4 cells are high; sometimes they are told, or it is implied, that there is such a benefit.”
Colfax said that one of the keys to success in addressing the epidemic is that “we engage people in meaningful conversation and conversations that are really about meeting people where they’re at in terms of their health care needs and delivering the best possible services.”
Colfax concurs there is a form of paternalism present in current medical care – the American willingness to do exactly what a doctor tells them to without discussing options or challenging assumptions leading up to the medical recommendations.
“I think it’s clear that across medicine, not just in terms of HIV, but in terms of improving health and wellness overall, that a patient centered approach is important,” he said. “But again, really having provider engagement and a partner based approach rather than a paternalistic approach is something that’s very important and certainly something that we’re supportive of as we move forward with the national strategy.”
Hanssens, of the Center for HIV Law and Policy, praised this approach.
“Dr. Colfax’s embrace of doctor-patient partnerships rather than paternalism is very good news,” she said, “and hopefully will inform future prevention, testing and treatment recommendations and guidelines.”