The Folly of Waiting for Godot

By Jeffrey Lewis

Like the protagonists in Waiting for Godot, the 1.2 million Americans who are HIV-positive are anxiously waiting. But unlike the gentlemen in Samuel Beckett’s classic play who wait in vain for someone who never shows up, the HIV community is awaiting something that almost certainly will arrive in June. That is when the U.S. Supreme Court will deliver its decision on the constitutionality of the Affordable Care Act.

If the Court upholds the ACA, it would mark a decisive turn in the fight against AIDS. First, the Act would expand Medicaid so that lower-income HIV sufferers can get earlier access to treatment. And second, it would eliminate the “pre-existing condition” limitations that have made it all but impossible for many HIV-positive people to obtain private insurance. According to the National Minority AIDS Council, these two provisions would “prolong life potentially by decades for literally hundreds of thousands of persons.”

With the Court’s decision just a month or so away, it is tempting to cross our fingers, sit on our hands ---and wait.

We must not succumb to that temptation.

For one thing, there’s no guarantee that the ACA will survive. And even if it does, most of the Act’s major provisions won’t take effect until 2014, or even later ---longer than many HIV-positive folks can afford to wait, in particular, the 3,079 individuals on waiting lists in 10 states to gain access to their life-saving medications under the AIDS Drug Assistance Program. More important yet, under the ACA, the federal government will effectively quit paying for health care in 2019. And when the feds turn off the spigot, we’ll still be left with the bills.

When that happens, the results are predictable. Programs will be cut. The needy will take yet another step backwards. Those with HIV and other chronic conditions will again fall victim to the long knives of congressional and state appropriators. And those of us on the front lines of the AIDS battle will once again be asking “what do we do now?”

One thing we can’t do is expect the pharmaceutical industry to shoulder the burden alone.

Like any business or industry, pharmaceutical companies need revenue, capital for new investments and shareholders who demand that they earn a profit. That means there is a limit to how much they can cut prices ---and a limit to how much we should expect them to.

One thing pharmaceutical companies can do, however, is drop their resistance to the creation of a single, common, and industry-wide Patient Assistant Program enrollment form. This step alone would simplify the process, eliminate confusion, and make it far easier for assistance to reach the people who need it most.

But even if the industry gets on board, there would still be a host of legal and operational obstacles to creating a single, common and universally-accepted PAP form. Instead of asking the federal government to become involved, I believe there is a private sector solution.

EHIM ---the company for which I serve as Chief Operating Officer ---is currently reviewing every PAP form from every drug manufacturer. Our goal is to take the pharmaceutical industry a solution so excuse is not a four letter word.

Meanwhile, there is another major problem brewing that we need to get ahead of. An over-the-counter HIV test is on now the horizon. While this would be a major breakthrough in identifying people in need of help, it would also likely swamp already bloated AIDS ADAP waiting lists. At present, there are over three thousand people across 10 states who have received an HIV diagnosis ---and many more not yet ADAP-certified ---on these lists. Making them even longer isn’t an attractive option.

But that is exactly what will happen unless eligibility for ADAP is expanded and Congress agrees to a long term funding commitment. I hope the pharmaceutical industry will take the first step by agreeing to allow any person with HIV and without prescription drug insurance coverage to be eligible for the ADAP solution.

Committing ourselves to ensuring that anyone with HIV but no insurance gets help would stop a race to the bottom in which states steadily lower ADAP income eligibility requirements. And in the long run, it would actually save money by slowing the flood of patients going to ERs because they don’t have access to medication.

Finally, there is one more thing to which all of us must commit. And that is to bring civility, respect and the word compromise back into our politics and national discourse. Who among us is infallible or has all the answers? Today ---more than ever- -we need intelligent public policy, not blind partisanship. HIV has no political affiliation; everyone who suffers from it is a member of our family ---the human family.

Jeffrey Lewis is the Chief Operating Officer at EHIMRx and the former President of the Heinz Family Philanthropies. He can be reached at jeffrey13@ehimrx.com. This material was part of his keynote address at the recent HIV Summit in Washington, DC. Lewis is also the past recipient of the ADAP Advocacy Association's ADAP Champion Award.