HIV/AIDS: The Best of Times and the Worst of Times

HIV/AIDS: The Best of Times and the Worst of Times
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Over the past three decades, HIV/AIDS has had a way of taunting us with progress and then reminding us of its immense devastation. Even in the early years, we had a parade of promising therapies that gave us hope, only to find out they did not contain the answer. Not until the advent of AZT, although far from perfect, were we allowed real hope for the future. Unfortunately until the development of antiretrovirals, those small steps forward were too late for so many of our brothers and sisters.

In the last few months, the media has been filled with encouraging, and even exciting, news about the progress in treating this horrendous epidemic. At the very same time, we have been dealt some real setbacks in the care and treatment of people with HIV/AIDS. The lesson is the same as it always has been to the HIV/AIDS community: embrace and celebrate the progress while not letting up the pressure until there is a cure.

The good news is indeed reason to celebrate. Real progress is being made in fighting this disease. From the International AIDS Conference in Vienna comes word that promising new gels have been developed that could dramatically lower the infection rate among at risk women. The progress toward ending mother to child transmission has been just short of a miracle. In addition, the Wall Street Journal published a story indicating that scientists have discovered three powerful antibodies which can neutralize 91% of HIV strains.

The bad news is that the economic situation is wrecking havoc with HIV/AIDS budgets, international funds to fight HIV, research and treatment and care. Many states are freezing the ability of people with HIV/AIDS to receive antiretrovirals and treatment. AIDS Drug Assistance Program (ADAP) funds have either been cut way back or frozen making it impossible for new clients to have access to them. Unless this situation is totally corrected, it could mean a death sentence for some people with HIV/AIDS.

This brings us to the need to keep up the pressure, seek new funds and most importantly hold people in government 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 people with the disease.

Medicare provides a vital source of health coverage for around 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 of the HIV positive population in the U.S. but also an increased lifespan for people with HIV due to antiretroviral medicines and other treatment advances.

When you get to accountability, we face an enormous problem with Medicare with the passage of the new health care law. Thrilled as I was with this major step forward, there is one part that is extremely disturbing to me. Especially since my journey over the years has taught me the urgent need to hold our 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 put pressure 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 health care providers, such as hospitals where large chunks of federal health care dollars are spent.

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 all Medicare beneficiaries. 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 of the matter is that the IPAB, like any other agency of government, can make bad and disastrous decisions which could dramatically impact our ability to treat, fight and win the battle against HIV/AIDS. And if they do, we have absolutely no recourse to change them.....none....nada.

Yes, we can assume that the appointees would be 'enlightened people." However anyone in government knows the bizarre process of selecting appointments. We cannot count on the basic good nature of human beings and can only count on our ability to hold them accountable in a democratic and open process.

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

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