Brandon Macsata is one of a rare breed—a Republican with a heart and a more open mind than many Blue Dog Democrats. His work with the ADAP Advocacy Association is well known and respected and I do my best to report on that work in the weekly E-News—you will have, in fact, seen in the April 30 edition mention of the ADAP Solutions Summit and the report that was compiled from it.
When I downloaded the report and began to read it, I got as far as “While the likelihood of the Affordable Care Act being overturned by the Supreme Court was considered, for the purposes of this Final Report, it is assumed that the law will remain Constitutional and thus, in effect.” before a bellow of, “NOOOO!” issued forth from my solar plexus.
Supreme Court or no, this law which I call Republicare because Republicans and their insurance company cronies got way more of what they wanted than President Obama did, will never be allowed to go into effect, let alone being in effect now. It will be picked apart, defunded, challenged in more lawsuits, and ultimately forgotten before any of the provisions that would actually benefit anyone with a chronic disease, including HIV, has a wisp of a hope of kicking in. So, with trepidation and, I admit, an urge to just dismiss the whole thing as yet more yada yada yada, I read on.
The first “Short-Term Recommendation” was “Leverage Pre-Existing Condition Insurance Plans (PCIPs).” SERIOUSLY??? Perhaps there in D.C. PCIPs are actually within the grasp of people making under $50,000 per year, but in Illinois they sure aren’t. As a non-smoker of 56, I would have to come up with $489 per month for a $1,000 deductible policy. In New Hampshire, I would have to pony up $909 (for the “indemnity plan”) or $669 for “managed care.” I’m sorry, but if a person meets the FPL requirements to get on ADAP, where are they going to get that kind of money?
Second on the list was “Coordination with Pharmaceutical Patient Assistance Programs.” While I have nothing but praise for the pharmaceutical companies setting up these PAPs and co-pay assistance programs, I have to wonder how long it will be before so many people are relying on them that the companies put a cap on how many can receive this assistance. Granted, that’s just my tendency to jump to the worst-case scenario and, as far as I know, there are no rumblings about these programs cutting back, but it doesn’t seem too far out there, does it?
The rest of the short-term recommendations seem sound and reasonable, as do most of the long-term ones, especially those that have to do with simplifying forms, standardizing eligibility, and making reforms to the re-certification process.
Obviously, this panel managed to get an impressive amount of work done in a short period of time, something our Congress and state legislatures could learn from!
But was there even one small voice there at the table suggesting that perhaps the best way to solve the ADAP crisis is to make ADAP moot by solving the general healthcare crisis? In other words, was this a repeat of those first rounds of talks in 2009 when, despite some fierce advocacy efforts, single-payer—even the “public option”—was not allowed in the room?
The tenacity of some of the AIDS organizations to cling to the fantasy of the ACA like those on the Right cling to their guns and bibles astounds me. WAKE UP! Realize that it’s not only possible, but wise, to be for President Obama while at the same time against Republicare! I’m not saying he is totally blameless, but I am saying that the current growing wave of support for single-payer, along with the opportunities provided by the political awakening that’s going on and the Supreme Court case, are there for us to use to make him do what he wanted to do in the first place. This time, he will have no re-election to lose, so why not go for the gold?
There is also an opportunity here to end the age of AIDS exceptionalism on the best of terms. The HIV community needed it at the beginning because it had to build a fortress of strength, courage, relentless demand, and unity against a world of fear, panic, condemnation, and ignorance. Why haven’t other diseases learned the ACT UP lesson? Perhaps because their diseases do not carry the potential for moral judgment, religious condemnation, or societal shunning the way HIV did and regrettably still does.
But I think we would all be better off if the HIV-positive joined hands with cancer fighters, diabetics, the mentally ill, the disabled, and all other fellow humans who deal with chronic medical conditions of any kind. Yeah, that’s what DUH’s about, but it’s more than DUH (if you don’t know about DUH, click here).
I recently spoke at the Global Health & Humanitarian Summit at Emory University in Atlanta. There were almost 250 activists from 120 worldwide organizations representing causes from Deaf Empowerment to the Peace Corps to Water for Life to Mothering Across Continents to the NFL Players Association to Congolese Genocide Awareness to Laughter for Wellness to many advocates for universal healthcare. It was an honor to be included and embraced by so many people doing such good work. But most of all, it gave me hope for this messed-up world. From Friday night to Sunday night, people met, marched, watched, listened, spoke, networked, and hugged. Not one incidence of money being stolen off tables selling things. Not one second of discrimination or rejection. Though tears were often shed, they were the good kind. And as I sat at the DUH table on Saturday morning and watched an impressive parade of doctors and nurses dressed in absurd clown costumes, playing band instruments surprisingly well, march through the labyrinth of exhibit hall corridors, I thought, “Not all is lost. As long as there are people like this, there’s hope for us yet.”
So I say let’s start thinking not of solutions to one facet of a crisis, but to nailing the whole thing. America doesn’t need ADAP or Medicaid or CHIP or PAPs—America needs a new healthcare system.