|Michael Saag, MD|
You've been a practicing HIV/AIDS doctor and researcher since the '80s. What's the biggest challenge today for people living with the virus?
At the top of the list is stigma. Most is what I call internalized stigma. There's a feeling among people who are infected that they somehow have done something wrong or that they're getting what they deserve. Or they feel ashamed. And that affects health care. They hide medicines or don't want to take it if somebody's around. If you contrast that with someone, say, who is diagnosed with lung cancer—they announce it to the world, and they get support—that underscores that struggle that folks have.
Similarly, what's the biggest challenge facing doctors and health care providers?
That's more the theme of the book: our fragmented, chaotic health care system. But what are our biggest struggles? Dealing with inequality. Every time I see a patient, I'm thinking, “What is their insurance status? What am I going to do for them or not do for them?” Every provider may not be articulating this, but every day that is their fight, and it's so frustrating. There are six vital signs: temperature, blood pressure, heart rate, respiratory rate, oxygen saturation and insurance status. It really changes and colors what we're able to do for a patient.
Then there is the issue of prior authorization. What's on the formulary for patient A versus B is going to be different. So I'll write a prescription for a patient, but then they'll come back and say the pharmacy won't fill this prescription because the drug isn't on my formulary. Then I have to make a decision: Do I write a script for some other drug—maybe not even an equivalent—or do I appeal for a prior authorization? It takes an average of 26 minutes per prescription to get prior authorization, and you can't delegate it. That's 26 minutes you're not seeing another patient.
Of course it's nice to chronicle the AIDS story from a first-person provider perspective—and hopefully that story is compelling—but the reason I wrote the book now is I'm so angry about our current health care system, and I'm more angry about how the public is debating and talking about it.
One major talking point is Obamacare, a.k.a. the Affordable Care Act. What's your take on how that will work for people with chronic illness like HIV and diabetes?
The reason I wrote the book was not to refute or support Obamacare. That's the wrong discussion. We need to think bigger and ask the question, What does our health care system look like, with or without Obamacare? The answer is: It's horrible. It's fragmented. It's chaotic. Nobody's happy. Obamacare is a very reasonable attempt to try to reconcile some of the inequities. We know, for example, that two-thirds of personal bankruptcies in the United States are generated by a health care expense and that 75 percent of those people who go bankrupt had health insurance.
Obamacare is attempting to fix that. How? It makes insurers throw away these inadequate plans that have a cap on an amount of spending—that's why people go bankrupt, because they exceed the cap and then they're held accountable for paying the bill—and it gets rid of the pre-existing conditions. Before Obamacare, if somebody had lupus and they ended up getting a different health plan, it might be a year before their lupus is covered. If they have to go in to the hospital during that year, the bills come to them and they go bankrupt. So those two simple things that Obamacare fixes are huge for people with disease.
The downside is that as these health insurance companies have to jettison these inadequate plans, by definition, they pass those costs onto the consumer. Hence the ads in Arkansas that are saying, “I had my insurance at $56 a month, and now it's up to $390.” Well yes, because your last plan sucked and this plan will actually cover you and keep you from going bankrupt.
Your book tells the parallel stories of HIV and the U.S. health care system. What's the connection?
The reason we had success against HIV was that we were all pulling together—patients, activists, providers, government, industry, academics. In contrast, with the health care system, we have chaos. Everyone's asking, “What about me?”—the patients, the family members, the physician, the hospital system, the insurer.
I actually think that [AIDS activist] Larry Kramer and the original ACT UP were extraordinarily effective. It was nonviolent. It got in people's face. It's unfortunate it took that degree of anger to enact change. But the community pulled together, and it hasn't happened since. And that's what we need for health care reform today.
There are two fundamental differences, though, that we didn't have in the fight against AIDS. No. 1, nobody was really winning in the fight against AIDS—not the patients, the families or the doctors. But in the chaos of the health care system, there are winners today who are violently going to fight against change. And that's mostly the for-profit insurance companies and to a lesser degree the pharmaceutical industry. They're the ones pouring millions of dollars into PACS and congressional and presidential candidates. That's who we're fighting, and if you let it, it can create a huge feeling of hopelessness. But we can't get defeated by that.
And the second thing that's different is that we don't have a voice. The beauty of the AIDS epidemic, if there is a silver lining from the '80s, is that on the historical shoulders of the gay rights movements of the '60s and '70s there was an understanding of how communities can effect change in a positive way. And the leaders knew how to organize and how to speak with one voice. Right now in our country, we don't have that voice in health care reform. And people who try to speak out—Obama is probably at the top of the list—are just demonized.
So I hope my book is a call to arms. We shouldn't put up with this. We need to organize and have a voice and have our system return to a focus on the patient and as much as possible minimize the profiteering on the misery of others.