September 16, 2010 at 3:24 pm EDT | by David Mixner
The best of times, the worst of times

In recent months, the media have reported much encouraging news about progress in treating HIV/AIDS. At the same time, we have been dealt some real setbacks. The lesson is the same as it always has been: embrace and celebrate the progress, and don’t let up the pressure until there is a cure.

The good news is indeed reason to celebrate. From the International AIDS Conference in Vienna came word that promising new gels have been developed that could dramatically lower the infection rate among at-risk women. The Wall Street Journal recently published a story indicating that scientists have discovered three powerful antibodies that can neutralize 91 percent of HIV strains.

The bad news is that the recession is wreaking havoc with HIV/AIDS budgets — both here and abroad. Many states are freezing the ability of people with HIV/AIDS to receive treatment. AIDS Drug Assistance Program (ADAP) funds have either been cut way back or frozen, making it impossible for new clients to access them. Unless this is corrected, it could mean a death sentence for some people.

It’s crucial for every American that cares about this horrendous epidemic to keep up the pressure, seek new funds and hold lawmakers accountable for their actions. Given the uncertainty with the economy and ADAP, it makes Medicare funds for treating HIV/AIDS even more critical in assisting those with the disease.

Medicare provides a vital source of health coverage for about 100,000 people with the disease. In 2006, Medicare became the single largest source of federal financing for HIV care. The number of people with HIV receiving Medicare benefits has grown over time, reflecting growth in the size of the HIV-positive population and an increased lifespan for people with the virus.

As thrilled as I was with the new healthcare law, there is one part that is extremely disturbing. Especially since my journey over the years has taught me the urgent need to hold public officials accountable for their actions in this battle for a cure.

Quite simply, with the creation of an entity called the Independent Payment Advisory Board (IPAB), we could lose our ability to pressure lawmakers for change. This new board is simply not accountable to anyone.

While the IPAB is tasked with cutting Medicare spending, it is exempt from any judicial or administrative review of its decisions and is barred from probing the government’s spending patterns on specific healthcare providers, such as hospitals.

Shackled by such restraints and yet dangerously unaccountable to Congress, the people or the courts, this board could turn its attention to successful programs in Medicare to carry out its cost-cutting mission.

The mere existence of an unchecked, powerful agency making life-determining decisions should be worrisome to everyone. Draconian decisions by IPAB to limit access to medicines to treat HIV will be free from judicial review, the need for advance public notice or even appeals from patients.

The fact is that the IPAB, like any other agency of government, can make bad decisions. And if it does, we have absolutely no recourse to change them.

Personally, I can’t think of a worse scenario than for our research leaders to be on the cusp of a cure, only to be denied the necessary resources because a government panel has blown research and development into the stone ages.

We must not be shortsighted in our zeal to bring down health care costs by thwarting future research and reversing already achieved progress. Stated simply, if we go this route, we would only blunt the more laudable and courageous goal of saving lives and one day eliminating this horrific disease once and for all.

David Mixner has been involved in public life creating policy and as an activist and writer for more than 40 years. Reach him here.

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