Left Field by Patricia Nell Warren
What’s the Toll?
When it comes to affordable care, we need a new deal
Just recently, columnist Kergan Edwards-Stout emailed me, saying, “I’m currently working on a piece timed for the 32nd anniversary of the first reported AIDS case. I’m looking for reactions from notables (such as yourself) on the question: ‘What toll has the AIDS epidemic taken on you?’ If you are willing, I would love a few sentences.”
So what’s the toll? On a personal level, it’s the dear friends and associates lost to AIDS. I still miss them—Philip Labhart, and Mike Ward, and others about whom I could write the rest of these two pages. Indeed, as I wrote this, my friend José Fernando Colón, founder of Pacientes de SIDA pro Política Sana, died of AIDS-related complications.
But Kergan’s question goes deeper than deaths of friends. I’ve been writing this column for well over a decade now. It motivated me to scratch more deeply into AIDS, and the entire health scene, than I might have otherwise. So the answer is many-layered, a journalist archeology. You have to dig down thirty or forty feet, and several millennia, into an ancient mound of rubble till you finally get to a layer of scorched walls and tangled bones—tragic relics of a final battle or natural catastrophe that ended a great civilization.
So, for me, there’s the toll of seeing a tragic reversal of direction that “healthcare policy” has been taking in our society. It’s not possible to talk about the “toll of AIDS” without looking at the toll of everything else.
Perhaps a little history is in order, on my own ethos about human need. I was born in 1936, just one year after Roosevelt’s administration added Social Security to the New Deal, to help a growing population of Americans deal with the Great Depression. FDR’s critics—like Catholic ultraconservative Father Coughlin—insisted that the New Deal was a “socialist dole” and that Roosevelt was “anti-God.” “Socialism” was already a political buzz word implying “atheist” and “anti-Christian.”
World War II swelled our national consciousness about government duty towards people—whether with care for millions of wounded soldiers, or food and medicine for millions of refugees. Government carried the burden of war and post-war rebuilding, because only government was big enough to do it. But after FDR died, President Truman tried to launch a national healthcare initiative in 1947, and got more lambastings as a “socialist.” This accusation was getting weightier as our former Communist allies became Cold War enemies.
As I grew up in the ’50s, many Americans felt comforted by the idea that the majority vote in our government might give a damn about the physical welfare of those people who are now referred to as 99 Percenters. Social Security added children and disabled, then other programs as well—unemployment, needy families, etc. In spite of new “socialist” programs, the country still seemed pretty solidly Christian to me. Indeed, the British and Scandinavian governments who launched similar systems about that time also seemed to have no trouble hanging onto their state-supported churches as they took care of their people.
But things were still dicey with U.S. healthcare. In the 1960s, another Democratic government aimed to fix things by introducing Medicare. During the hot 1962 debate, President Kennedy warned that the U.S. was falling behind—even behind countries that had been devastated by World War II. He said, “We are behind pretty much every country in Europe in this matter of medical care for our citizens. The British did this thirty years ago.” Once again, however, there were screams of “socialism,” and Kennedy’s bid was fiercely opposed by ultraconservative Republicans.
After Kennedy’s assassination, President Lyndon Johnson got Medicare passed. With time, Medicaid and other programs were added, to broaden outreach to specific groups of needy citizens—setting the stage for the Ryan White CARE Act when the AIDS epidemic first hit. Outside the U.S., we were even willing to extend our “socialist” programs into fighting AIDS and other global diseases like TB and malaria. Overall, it’s true that these programs are not perfect. Flaws and abuses need to be fixed.
But today, fifty years after President Kennedy said those words, we’ve actually slid back into arguing about “atheist socialism,” and whether government should bear any responsibility at all for health of its citizens. President Obama is branded an “atheist Muslim socialist” for daring to try reforming our system in a way that still might meet the needs of most Americans. While I’m not in agreement with every point of the Affordable Care Act, I think the ACA is vastly more in keeping with what we’ve learned since the Depression and World War II than anything proposed by the opposition.
Certain ultraconservative leaders like Michelle Bachmann openly advocate the abandonment of publicly funded healthcare, in favor of a privatized system that would essentially deny care to any American who doesn’t personally save for it and can’t personally afford it. Some even brandish their Bibles, declaring that government healthcare promotes “sloth” and is therefore “un-Biblical” and “un-Christian.” The changes they propose are driven by ideology, but I doubt they will work. Indeed, I think they will result in misery for millions.
Meanwhile, the overall decaying quality of U.S. healthcare puts us 37th on the list behind EU countries with universal healthcare. Indeed, the U.S. is taking better care of poverty-stricken PWAs in Africa than we are taking of our own poverty-stricken citizens who live with HIV/AIDS.
Little by little, since the 1980s, our government has allowed big business—insurance companies, pharma companies, HMOs, etc.—to take the driver’s seat in U.S. healthcare policy and practice, to the point where “health” is primarily viewed as a conduit of extreme profit to business, and only secondarily as a provider of benefits to human beings.
Where AIDS is concerned, here’s an example. Overseas, most pharma companies sell ARV drugs as generics at a discount because they have to meet the needs of cash-poor developing countries. But here at home, much ARV marketing is high-priced non-generic drugs, which keeps treatment costs artificially high in the U.S. This strategy is especially hurtful to state ADAP programs, which supposedly are there to serve the neediest Americans. It’s true that, in 2014, the Affordable Care Act will mandate fifty-percent discounts on non-generic drugs in the “doughnut hole”—but it remains to be seen if this ACA requirement will grant any relief to PWAs on the ADAP lists.
The Republican-inspired sequestering battle is also wounding ADAP. As I write this, the pending Continuing Resolution has deleted that $35 million in relief funds promised by President Obama in 2011. NASTAD estimates, “This could result in an estimated 7,920 current ADAP clients losing access to life-saving medications. Sequestration will likely result in an additional 5.2% cut to ADAP’s FY2013 funding.” In other words, the ADAP waiting lists will lengthen again…and more deaths will happen.
Meanwhile, there are Republicans—and some Democrats too—who also propose drastic cuts to Ryan White, NIH research, and HIV prevention efforts.
But the issue of affordability goes way beyond AIDS. Example: Oncologists are speaking out against high-priced cancer treatments. As I wrote this, a group of them asked, in a quote that went viral on the Web, “What determines a morally justifiable price for a cancer drug? A reasonable drug price should maintain healthy pharmaceutical industry profits without being viewed as ‘profiteering.’” AlterNet researcher Thom Hartmann took his own look at prices and announced recently, “Last year, 11 of the 12 new-to-market drugs approved by the Food and Drug Administration were priced above $100,000 per-patient per-year.”
Government—notably Congress—is doing little to combat these trends because it is now the prisoner of out-of-control lobbying and political contributions.
Seeing these trends, I don’t put any stock in the frequent media blitzes that we’re “on the brink of a cure for AIDS.” Right now the U.S. is doing one of those blitzes with immunology research by a Danish team. The Danes insist that their approach, if it works, will be “mass-distributable and affordable.” Based on the record, however, I doubt that any significant breakthrough, whether a vaccine or anything else, will be allowed onto the market if it means a big step down from current levels of profit.
As long as extreme profit runs Washington, D.C., we can forget about preserving the commitments to human need that were first put in place during the Great Depression and after World War II. There will be plenty of money in the reduced federal budget for more wars, but not much for the health of Americans who are supposed to support these wars.
In short—for me, on the thirty-second anniversary of the first reported AIDS case—the United States of America is now a country where a majority of people in power don’t give a damn about the physical welfare of most citizens. The nay-sayers are finally getting the upper hand. If they had been this powerful in 1935, or 1962, we would never have gotten Social Security or Medicare—or even Ryan White.
Worse, in my journalistic archeology, I now find myself at the bottom of the trench with the tangled skeletons. Sooner or later, denial of publicly funded care may be mirrored in the national mortality rate. How publicly visible will this final toll have to be—before the American people get angry enough to organize as voters and put an end to all this contempt for human need?
That could be the final toll of AIDS—the people who die not because of the virus itself, but because they couldn’t afford or access the current treatment. And because “affordable” new treatments that could appear in the research pipeline might be politically DOA.
Copyright © 2013 by Patricia Nell Warren. All rights reserved.