February 19, 2014

Does an AIDS doctor buy "Dallas Buyers Club?"

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In the Oscar contender movie “Dallas Buyers Club,” Matthew McConaughey plays Ron Woodruff, a non-fictional character who contracted AIDS in the early 1980s and who created a “foundation” to circumvent healthcare hurdles to provide medicines and therapies not approved by the FDA to himself and others with AIDS. The buyers club was, like people with AIDS, an outcast, operating on the fringe.

The movie begins in 1985, about the time Michael Saag, M.D., was finishing his medical training in infectious diseases at the University of Alabama at Birmingham. He would go on to gain international recognition as a leader in HIV research and AIDS care, president of the national HIV Medical Association and director of the Center for AIDS Research at the UAB School of Medicine.

So, what does Saag think of the Hollywood version of his real life?

“The movie was impressive on many levels. Matthew McConaughey nailed what it was like to be a patient and what they struggled with, as did the other actors. There was a certain type of desperation that they captured completely. The buyers’ clubs existed because of that desperation,” Saag says.

“Dallas Buyer’s Club” is nominated in several Academy Awards categories, including Best Picture, Best Actor in a Leading Role for McConaughey and Best Actor in a Supporting Role for Jared Leto.

In April, Saag will publish “Positive: One Doctor’s Personal Encounters with Death, Life and the U.S. Healthcare System,” a book that recalls his own experiences of the AIDS crisis and lingering problems with health care delivery in the United States.

In Positive, Saag describes struggles and frustrations with a dysfunctional healthcare system at a time when most of his patients died for lack of adequate therapies.  

“I would tell medical students, ‘Think of your five closest friends growing up. Four of them have died in the last two years. How do you feel?’ It’s scary, it’s lonely and it’s infuriating, because you look around and you don’t see anything being done,” Saag says.

As in the movie, the FDA’s intentions were to protect people from unapproved medications. “But nobody pulled back and asked, how many harmful effects are there that we didn’t anticipate? The buyers clubs brought that out in full relief,” Saag says.

“Patients would ask the FDA, ’Why are you not allowing us to gain access to these medicines?’ And the FDA responded: ‘Because we don’t want you to get hurt.’ And patients would say, ‘But I’m dying of this disease! How much worse could it be?

“It was a real phenomenon that was quite difficult to stomach,” Saag says.

Now for the down side

If “Dallas Buyers Club” accurately portrayed Ron Woodruff as a profiteering pharmaceutical cowboy, it was a departure from the reality Saag knew.

“The buyers clubs I was familiar with, especially the one in Atlanta, were not for profit,” he says. “The thing that really irked me (about the movie) is that the guy was doing this to line his pockets. I’m not saying he wasn’t doing a good thing for other people. But the best buyers clubs I knew were communes, coops, and they worked together to gain access for everyone and they tried to give it to as many people as they could. If they had a profit, they plowed it back into what they were doing.”

In Positive, Saag recounts a story about Tom Blount, the founder of AIDS Treatment Initiative, the Atlanta buyers club. Tom’s partner, Jim, was dying of AIDS and Merck wouldn’t release their drug, Indinavir. “Tom knew the power of the drug, so he flew to Merck’s office to implore them to give Jim the drug. In the meeting, Tom told them, ‘in the time we’ve been talking, the number of people who have died from AIDS is the same number who died in the 747 over Lockerbie.’ The significance was that a Merck researcher had been on that plane.”

“The AIDS crisis taught me as a physician to be a partner with the patient. I learned to listen to what they had to say and incorporate what they were going through into their treatment. Treatments only work if the patient’s bought into a plan that we develop together.”  
“What the buyers’ clubs did more than anything was help the community organize,” Saag says. “It put them in the same room together so all their energy, their anger, could be turned into a positive direction.” The clubs’ actions played a significant role in moving the FDA toward faster approval times and wider access to medications.

Another part of the movie that blurs the lines of accuracy is the notion that the drug “Peptide T” kept Woodruff alive. “It was an inert substance,” Saag says. “It never worked in a human trial. That was a little tough to swallow. He (Woodruff) was doing other things that prolonged his life.”

The movie also created tension between Woodruff and one of the physicians, who was portrayed as uncaring to patients and cozy with drug companies. A woman physician, played by Jennifer Garner, was the softer, more understanding physician. She, Saag says, was more typical of care givers he knew.

“The AIDS crisis taught me as a physician to be a partner with the patient,” he says. “I learned to listen to what they had to say and incorporate what they were going through into their treatment. Treatments only work if the patient’s bought into a plan that we develop together.”

In 1988, Saag founded the 1917 Clinic in Birmingham, named after the street address in order to provide a level of anonymity for the patients. The clinic was an early model of a medical home, or patient-centered primary care, in which health providers from a variety of disciplines – social work, nurse practitioners, physicians from different specialties – came together to treat patients as a team.

“The concept of partnering for care was a hallmark of HIV care, so much so that we adopted this notion of being a medical home, where patients are welcome, their opinions are sought and that they’re working in total partnership with the entire team,” Saag says.

Despite a little Hollywood hyperbole, Saag gives “Dallas Buyers Club” two thumbs up.

“At the end of the day, the movie did a service because it was about a very powerful time in our history where there was a disease that was ravishing people and destroying communities, and how those communities responded by coming together. And it points out the deficiencies of our current healthcare system a little better.”

As Saag writes in his book, that’s a lesson that, if applied to medicine throughout the country, would provide healing powers to a broken health care system.