HIV/AIDS: We Need a Seat at the Table in Health Care Debate

The health care debate is not over. Clearly there are a large number of Americans who would love to see the entire package repealed and others who want to make changes to either weaken or strengthen the basic legislation that was passed in 2010.

Given the historical passage and scope of the health care reform none of us should be surprised by the reaction. Change comes with both fear and some pain. Those two ingredients create mistrust, misunderstanding and misinformation. Such is the process of Democracy.

The HIV/AIDS community, for the most part, was a strong supporter of the President's health care reform. Over the last three decades, we personally have seen the price that comes with a government that does not embrace and heal our sick. More than most, we felt a sense of moral urgency for the passage of the health care legislation. The community strongly supported and still supports the new system of health care in America.

However, that does not mean we should blindly fight all efforts to change the bill. Some actually benefit our community. As these changes, good and bad, are debated in Congress and among Americans, we must be key players in that debate. Not only must our voices be heard but we should be at the table where decisions are being made.

Over the years we have painfully learned that we must take care of our interests or they will be ignored by the decision-makers. We have learned to rise above partisanship and fight for the rights, protections and benefits of people with HIV/AIDS.

HIV/AIDS patients have a lot at stake when it comes to changes to Medicare. Roughly 100,000 of them depend on the program for health coverage. And, starting in 2006, Medicare is the single largest source of federal financing for HIV/AIDS treatment.

We've taken tremendous strides in the fight against HIV/AIDs in this country. Indeed, just a few weeks ago scientists announced the discovery of antibodies that appear to neutralize over 90 percent of HIV strains. The cutting-edge antiretrovirals developed over the past few decades have dramatically improved the length and quality of life for the average American HIV patient.

Plus, the FDA approval process has been upgraded and streamlined to get new treatments into the hands of patients quickly and efficiently.

But this battle is far from over. There still isn't a cure for this scourge. And too many patients still don't have consistent access to top-flight treatments. Tens of thousands are on wait lists for coverage for their promising medications. ADAP has even been abolished in some states. With these major advancements coming at a time of great economic uncertainty, it is even more imperative that we play a major role in this new debate.

Over the last three decades, our greatest strength has come from holding those accountable who are making the decisions. Not only did we choose traditional means of creating change, we also filled the jails and held individuals accountable for their decisions. In the struggle we always had a way to appeal bad decisions, cuts or laws that would discriminate against people with HIV/AIDS. If the door was blocked, we created a new entrance and walk proudly and strongly through it.

Now it is imperative we seek those areas where we agree with making change, and support them and oppose the others that would strip the Presidents program. There are parts of the legislation that actually threaten the well-being of HIV/AIDS patients. Those who want to keep quality of care as the top priority should be especially concerned about the establishment of the new Independent Payment Advisory Board, or IPAB.

Comprised of 15 presidential appointees, IPAB's purpose is to take tough Medicare cost-cutting decisions outside the political arena. Starting in 2014, the Board is empowered to make recommendations for cuts to Medicare if the program is expected to exceed that year's preset spending target.

These recommendations automatically become law unless Congress acts to stop them by making equivalent program cuts. They can't be appealed, and are exempt from administrative review. All in all, IPAB would have a great deal of power with very little accountability.

Unfortunately, IPAB represents a step back in the fight against HIV/AIDS.

While there are some limits on what the Board can do to cut costs, IPAB does have the power to adjust reimbursement rates for physicians participating in Medicare. In practice, that can only mean cutting payments to doctors.

Such cuts will undoubtedly drive even more doctors out of the program. Already, many physicians are declining to take on new patients covered by Medicare as a result of low payment rates. Some doctors, faced with the prospect of literally losing money on every enrollee they treat, have simply stopped participating in the program at all.

HIV/AIDs patients depend on highly trained, specialized physicians. Each and every patient has a unique combination of retrovirals they depend on to keep them alive. If promising therapies are cut because they are deemed too expensive by IPAB, then we are literally endangering the lives of people with HIV/AIDS. It's imperative that they receive consistent, high-quality management of their disease. If IPAB starts cutting doctor rates and pushing out caregivers, HIV/AIDS patients could lose access to qualified physicians, resulting in a dramatic drop in quality of care and potentially an unnecessarily early death.

IPAB is also empowered to restrict Medicare coverage of certain drugs and other treatments.
Pharmaceutical companies have invested hundreds of millions of dollars in new HIV/AIDS treatments not out of altruism but because they can make up those research costs in sales. If IPAB decides that the biggest public insurance program, Medicare, will not pay for new, advanced treatments, firms will get scared off from starting new research lines. New, life-savings treatments simply won't get developed.

To make matters worse, HIV/AIDS patients have literally zero recourse in the event IPAB's decisions harm them. By design, the board is insulated from public opinion. It doesn't even have to listen to the concerns of constituencies that will be affected by its decisions.

People with HIV/AIDS have earned a place at the table. We should now pull back that chair and sit at it and protect our three decades of advances.

David Mixner has been involved in public life creating policy and as an HIV/AIDS and LGBT activist and writer for over 40 years. He has had two bestselling books, "Stranger Among Friends" and "Brave Journeys," both published by Bantam Books.