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Passing the Senate Health Reform Bill: One Big Step Forward for People Living with HIV/AIDS

The health reform bill in the Senate will make dramatic improvements for people living with HIV/AIDS, including eliminating exclusions of pre-existing conditions, expanding Medicare to more Americans, and setting caps on out-of-pocket expenses.

More than most groups, people living with HIV/AIDS have a lot at stake in ensuring that Congress enacts comprehensive health insurance reform right away.   People living with HIV are more likely to be uninsured than other Americans.  They are more likely to receive substandard care from being underinsured or because of high cost-sharing and other barriers to quality care.  And, research tells us that uninsured people living with HIV are likely to learn their HIV status and come into care later than others…which means missed opportunities for protecting their health and missed opportunities for preventing the spread of HIV.

Enacting comprehensive health reform as a means of expanding access to care for people living with HIV has been a top priority of the HIV community for many years. We have never been closer to achieving this significant milestone.  The House of Representatives has passed its bill, which does many important things to improve health insurance coverage for people living with HIV.   Two committees of the Senate have passed bills, and Majority Leader Reid has been working to craft a bill that can attain the needed 60 votes in the Senate.  Recently, some disheartened and passionate advocates have asserted that the Senate bill does not do enough and that it should not be enacted.   I believe an objective analysis of the current situation and the improvements in health coverage that will come about if the Senate bill were enacted demands that we forcefully counter this self-defeating perspective. 

Don’t get me wrong…I understand the desire to push for more, but to quote President Clinton’s recent comments on this issue, “America can't afford to let the perfect be the enemy of the good.”  I fully understand the desire to ensure that the bill sent to the President does as much as possible to expand coverage, lower costs, and improve the quality of care.  Despite its critics, however, the Senate bill makes solid progress on all of these measures and the Senate’s vote on its bill is not the end of the process.  Advocates for people living with HIV can and should continue to push for provisions in the House bill that they support.  They can and should also push for technical changes that could clarify the intent of policies affecting people living with HIV.  Collectively, we must work to make the final legislation as protective of people with HIV as possible…while making sure that every step of the way we are moving forward and rejecting the arguments of those who want to keep things the way they are.  For people living with HIV, the status quo is the ultimate nightmare scenario.

For years, the HIV community has called for expanding Medicaid as a strategy for expanding insurance coverage for people with HIV.  In particular, there has been recognition that the current disability standard for Medicaid and other public programs that keeps most people with HIV from becoming eligible for Medicaid until they have an AIDS diagnosis is a serious problem.  The Senate would expand Medicaid to all people up to 133% of poverty.   The importance of this single provisioncannot be overstated.  This is huge. 

People living with HIV bear the burden of having a highly stigmatized disease and they regularly face discrimination simply on the basis of their health status.  They also are particularly vulnerable to pre-existing condition exclusions.  Several years ago, a former colleague, Karen Pollitz (a researcher at the Georgetown University Health Policy Institute) and others, did a study for the Kaiser Family Foundation where they constructed seven hypothetical applicants for individual insurance coverage in 8 insurance markets across the country.  In these markets, there were a total of 60 insurance options available.  One of the striking, but not surprising findings of their work was that the applicant with HIV was denied coverage every single time.  The Senate bill, along with the House bill, would outlaw this type of discrimination by eliminating pre-existing condition exclusions.
People living with HIV are also especially cognizant of the barriers to care posed by unreasonable cost-sharing even when they have insurance.  On average, antiretroviral therapy costs between $12,000-$15,000 per person per year.  When we add in the cost of anticholesterol medications, anti-hypertensives, prophylactic drugs to prevent other infections, and other prescription medications, the average drug costs for people living with HIV rise even higher.  Even co-payments of $25 per prescription may seem reasonable to many people, but they become a bigger burden for people with HIV who may be filling ten prescriptions per month.  These same individuals may also face significant co-payment burdens from seeing multiple providers.  Reforms in the Senate and House bills will impose annual out-of-pocket caps, for the first time placing an upper limit on what individuals with high-cost chronic conditions will have to pay out-of-pocket.

These are just some of the many very significant improvements that are within reach. We can see the light at the end of the tunnel.  While people living with HIV and their advocates should continue to advocate for the best policies, let’s not lose sight of the very major improvements in access to and quality of health care for people living with HIV that will be a reality when the President signs into law health reform legislation.  Now that we are this close to achieving our long sought goal of affordable coverage for people living with HIV/AIDS, we need to work as hard as we can to cross the finish line.

Jeffrey S. Crowley is the Director of the Office of National AIDS Policy and Senior Advisor on Disability Policy