Treatment Horizons by Chael Needle
President Obama’s fiscal year 2014 budget plan includes increases in funding for ADAP and the various components of Ryan White and sustained or increased funding for CDC prevention services, HOPWA, and NIH and the Veterans Administration. Yet, even in the interim, he’s not finding support.
When Congress recently passed a spending bill to fund the government through the remainder of fiscal year 2013, the continuing resolution was missing vital funds for individuals living with HIV/AIDS: $35 million in emergency relief funds for AIDS Drug Assistance Programs (ADAP) that had been put in place by President Obama in late 2011. According to the Foundation for AIDS Research, every state will be affected and lifesaving medications for individuals in the progam will disappear from pharmacy cupboards. The most in need, once again, will be the last in line.
And the situation is compounded by the fact that $10 million in emergency funding for Ryan White Part C clinical programs was discontinued. In addition, sequestration cuts will deduct over five percent from ADAP and Ryan White Part C providers.
Add to this global HIV-related health cuts—even though the President has prioritized funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria, the funding request for the President’s Emergency Response to AIDS Relief (PEPFAR) is the lowest it has been in four years.
Advocates, including the members of the HIV Medicine Association, responded to these puzzling, life-altering budget cuts.
When asked about why Congress would not support President Obama’s proposal, HIVMA Chair Michael Horberg, MD, MAS, FIDSA, suggested that, if asked, nearly all in Congress would vow support for HIV-impacted Americans. “In fact, I think there’s even broad support for Ryan White. It’s been a clear success. It has shown how real quality healthcare can be delivered in a coordinated fashion and really have tremendously positive results,” he continues, pointing to a recent poster at CROI by Dr. Laura Cheever, associate administrator of the Health Resources and Services Administration (HRSA), about what the CDC calls the “care cascade,” a continuum of engagement in HIV care, from those infected but unaware or not linked to care to those experiencing viral suppression on treatment. Remember those CDC statistics that showed only twenty-five percent of those who are living with HIV in the U.S. are virally suppressed? An HRSA study found that seventy percent of all people who have ever been to a Ryan White visit, at least once in a year’s time, are virally suppressed.
That’s evidence of real success. “But in these times of economic restraint, some Senators and Representatives have a very short-term vision and don’t realize the long-term economic benefit of keeping HIV-infected patients healthy, because we know it improves their long-term health outcomes; we know it reduces transmission of the virus; and we know it improves long-term health costs.
“The data is clear that investment in Ryan White, investment in care, getting patients to the right provider, making sure they get the right care, getting them tested, and into care, including getting them the right medication, is cost-effective in the long-term. To think nothing of the fact that it is the morally right, the medically right, and the public-health right thing to do.”
Is there anything other than reaching out and putting pressure on Congress that people living with HIV/AIDS can do at the grass-roots level?
“One is tell your stories. Tell your stories about how these programs have so significantly helped. Not just where further efforts are needed but also the stories of how things have been successful that would have only happened because of Ryan White, because of increased AIDS funding, because of increase in access to healthcare. That’s very critical,” says Dr. Horberg, adding that, similar to what the HIVMA has tried to do, alliances among physicians, researchers, and patients on the local health level can be nurtured or, if in place, strengthened to create a “unified voice” because “alongside increasing Ryan White, increasing the general programs for AIDS, and fully funding the Affordable Care Act, the research at the National Institutes of Health and the CDC has what’s helped us make these gains. That cannot be ignored. All of these groups have worked so well in concert, especially in recent years, that we don’t want to see these destroyed by shortsighted policy and funding.”
Telling our stories is not the only thing we can do, but, as Dr. Horberg, suggests, it may make the abstract more concrete. And that kind of reality is harder to ignore. “I say this repeatedly: When we go to advocate, I can supply the statistics until [policymakers] are blue in the face but they need to be able to put a human face on [HIV/AIDS]….They need a face. And the more stories we can collect, and we can tell, it’s incredibly powerful.”
Says Dr. Horberg: “We support the President’s budget. We are very disappointed that there is an apparent decrease in PEPFAR and global AIDS because we think that’s also shortsighted, even from our own domestic interests but certainly from a worldwide role from a medical standpoint. But we do believe that more funding is not just appropriate but necessary—to continue the medical success we’ve seen and extend that medical success.”
Chael Needle wrote about HDAC inhibitors and overcoming HIV latency in the April issue.
Read this article in the May 2013 digital issue by clicking here.