The Fight


Editor’s Note: Proceeds from this month’s newsstand sales will be donated to UAB’s 1917 HIV/AIDS Clinic.

We were so inspired here at the magazine that we wanted to add our resources to the effort made by the 1917 Clinic. As a result, we are donating our proceeds from this month’s newsstand sales to the clinic in appreciation of the great work done there. The 1917 Clinic Development Fund invests in patient programs at the clinic and supports the Community Advisory Board and community outreach. Much of the work they do in the community is to raise awareness of HIV, reduce stigma, improve access to care, and prevent transmission, especially to those most vulnerable.

If you’d like to make your own donation, send your check to The 1917 Clinic Development Fund at UAB at 845 19th Street South / BBRB 256, Birmingham, AL  35294-2170 or donate online here.

(Your donation is tax deductible.)

 

 

Dr. SaagThe Fight

 

In his new book, Positive, Dr. Michael Saag shares his experiences as a leader in the fight against HIV/AIDS.

Introduction by Lindsey Lowe       

Portrait by Art Meripol

 

What’s admirable about Dr. Michael Saag is not his list of accomplishments, though it is long. He’s published more than 300 articles in peer-reviewed journals (concerning his groundbreaking work with HIV/AIDS); founded the University of Alabama at Birmingham’s 1917 Clinic, a comprehensive HIV outpatient clinic; was awarded the President’s Medal, the highest honor given by UAB; and the list goes on and on. But even more tremendous than those things is what drives them: Saag’s commitment to impact people in a way that leaves them better than when he met them. It’s only serendipity, he says, that he happened to end up doing that in the HIV/AIDS arena. “It was a convergence of opportunity and circumstances,” he explains. “Because this was a new disease, the existing faculty was already consumed with other things related to [infectious diseases], so there wasn’t anyone available to fill the void. I sort of fell into it.”

Despite Saag’s seemingly accidental wandering onto the HIV/AIDS battlefield, don’t be mistaken in thinking he has been anything other than a warrior for the cause for the last three decades. He was pivotal in the global crusade against the disease, fighting on the front lines until the tide turned and HIV/AIDS became less of a death sentence and more of a chronic—but manageable—condition. In fact, he played a key part in turning that tide, directing the first in-patient studies of seven of the 25 drugs currently on the market to treat the disease. It’s this story—the story of his finding his way onto the AIDS battlefield and pitching camp until he had made a difference—that he tells in his memoir, Positive: One Doctor’s Encounters with Death, Life, and the US Healthcare System (released in April 2014).

The book also serves as a stimulus to have a discussion about the United States healthcare system as it stands now, Saag says. “[I wanted to ask], ‘What type of healthcare system do we have now, and what kind should we have? Are we really happy with the system we have? Are we proud of this?,’” he says. He explains that as a healthcare provider, he has not only seen the people who are affected when the system fails them, but he knows their names. “I started getting really angry,” he says. “We were able to turn HIV from a certain death sentence to a manageable condition by all pulling together in the same direction. Currently, in the healthcare delivery sphere, we’re just pulling apart, and it feels hopeless; that hopelessness feels very similar to what it felt like in the early- to mid-80s when so many people were dying, and I couldn’t figure out why. So my current hope is that if we can figure out a way to bring HIV under control, surely we can find a way to tame our healthcare system.”

Saag’s office is filled with awards, photos, and knickknacks, and many are tangible reminders that he is changing the face of the world with his work. He points out a crimson hat, which belonged to Kevin, and a photo of Michael dancing, which was a gift from Michael himself, and he continues, picking up photo frames and naming off names. He looks around. “They’re all here,” he says, and he is referring to the ones he lost along the way—he remembers their names, too. That has undoubtedly been the hardest part, of course, but he says that the most difficult and the best aspects of his work are actually intertwined: “Dealing with the death and dying and not being about to do much about it in the beginning was the most challenging…but being part of the discovery that began to make it stop, that’s the most rewarding.” That is to say, without experiencing the hopelessness of HIV, he would never have been able to understand the tremendous hope his work has brought.

And that’s the whole point, he explains. That’s the commitment. “The most important thing any of us can do is strive to achieve our potential. We’re all given certain talents and gifts, and the challenge for each of us is to use them in a way that does the most good. If we’re lucky, we begin to achieve that before death,” he says. “And if we’re really lucky, we have fun along the way.”

 

The following are excerpts from Saag’s book, Positive.

 

From Chapter 20

In the case of HIV, can any of us imagine what it would have been like had the Ryan White CARE Act not come along when it did in 1990? When it was first passed, we had very little to offer HIV patients and their families. Ryan White was designed to help patients access care so they could access AZT, a medication that would at least buy time—and when that failed, they could die with dignity.

As scientific advances exploded through the 1990s, the Ryan White program assured access to care and access to life-saving medications. Among HIV-positive patients in the United States, fully 40 percent are uninsured and another 20 percent are underinsured—so the Ryan White program made sure that every patient was taken care of. To those with no other way to access care, Ryan White has been an absolute lifeline. Gratitude abounds.

But it begs the question:  Why did we have to create such a solution to get one group of patients care?

It’s worth remembering that the Ryan White program was designed by Congress specifically to close a gap.  Congress knew that the majority of patients with HIV were poor, lacked health insurance, and generally were disenfranchised from the existing health care system.  And members knew that unless something closed that gap between what the existing system provided and what the patients needed, a couple of things would happen: (1) infected people would die unnecessarily, and (2) infected people would spread the virus to others at a higher rate. I was appalled at how many lawmakers dreaded the second consequence and appeared willing to accept the first.

But motivations aside, the Ryan White CARE Act was passed in 1990 and it has done its job exceedingly well. So much so that, as I noted earlier, a 2012 study of people followed at a Johns Hopkins University clinic could not demonstrate any differences in health outcomes (including mortality rates) between those with financial means and those with incomes below 100 percent of the federal poverty rate. This is remarkable because in almost every other disease state, poor patients in the United States have much worse outcomes in every category.  Not so with HIV/ AIDS, because Ryan White funding significantly closed that health care gap between The Haves and The Have-Nots who have HIV.

Everyone within sound of my voice (or reading of this book) knows my belief that in our broken health care delivery system, the “safety net” that keeps patients from falling through the cracks is made up solely of health care workers who give a damn. In the case of HIV patients, those tenacious workers were paid and equipped in large part through the Ryan White program. I shudder to think what would have become of those patients if Ryan White had not been created. And I lose sleep—particularly when it’s budget reauthorization season on Capitol Hill—thinking about what would happen if Ryan White went away.

While this is my particular nightmare, here’s what keeps other health care professionals awake at night: They have no Ryan White equivalent. They have no supplemental, gap-closing program for whatever disease has their attention as HIV/AIDS has mine. They have no dedicated source of additional funding to do for their disadvantaged patients what the current health care system fails to do.

Actually, no other country in the industrialized world has a Ryan White program.  Why is that? Because they don’t need it.  Ouch.

All the patients with HIV in Japan, Switzerland, Australia, France, Italy, Canada, Spain, Sweden, Norway, Austria, Netherlands, Finland, Portugal, Germany, United Kingdom, and Denmark, have full access to care without a Ryan White-like program. That’s because each of these countries has a system of universal health care that covers all of their citizens in a coherent, reliable fashion. And compared to the U.S. system, those countries’ systems deliver health care outcomes that are better by almost every measure, and accomplished at about half the cost, according to the 2013 NRC/IOM report.

If you do not find the previous paragraph disgusting, try reading it again.

 

From Chapter 6

“David” was striding through an East Coast airport wearing his airline pilot’s uniform on his way to captain a flight. Partway down the concourse, he could not catch his breath. After an examination revealed pneumocystis pneumonia (PCP), David retired from the airline. He moved home to Tuscaloosa to work as a private pilot and live with his mother, “Eva.”

David was among the first patients at The 1917 Clinic. He became a friend and also served as my unofficial mentor and guide to the gay community, a population from which I drew many of my patients but about which I was largely ignorant. I knew some of us were straight and some of us were gay, but it had never meant much to me.  David changed that.

Because he knew I meant well, David patiently answered my questions, including some I now realize may have seemed daft. I distinctly remember the moment when I hit him with that clueless-straight-guy classic: “So, David, when did you know you were gay?” He smiled knowingly, paused, and said, “Mike, I’ll answer your question but first I want you to answer mine: When did you know you were straight?”

By answering in that way, David might have been gently mocking me—and I definitely felt my face redden. But mostly, he was trying to help me understand, honestly and viscerally. He followed up with this: “Let’s say you’re walking down a street and it’s just you, looking straight ahead. On the left side of the street is Christie Brinkley, on the right side of the street is Tom Selleck, and they’re both naked. Who will you look at?” We each knew the answers—ours, and each other’s—without saying a word.

“None of us gets taught this,” he said, looking at me kindly. “It’s who we are.”

I got it. And I so appreciated David’s ability to explain things, to serve as an interpreter among the various professional and cultural groups in which he and I both moved, that I recruited him for that role repeatedly. A former Navy fighter pilot, David was a natural in social settings, a handsome, compact man with a gregarious nature and a gift for public speaking.

As David continued to battle the PCP, hospitals in some of the hardest-hit cities—Los Angeles, San Francisco, New York—began offering patients a new therapy: inhaled pentamidine, an infection-fighting agent delivered via a costly nebulizer apparatus. David was a candidate for the therapy, as were a number of other patients at our clinic which was then about a year old. But our shoestring operation didn’t have the money for the equipment to offer pentamidine. So when some patients who wanted the treatment threatened to march on the clinic to protest us not providing it, I was beside myself.

I vented my frustration to David: “What the—?! I don’t want news cameras covering protests outside this clinic, showing every bigot in the state where it is!”  I could see how well this was going to go down in the Dean’s office.  Besides, I had self-righteousness on my side: “We set up this damned clinic for these patients when they were outcasts, and now they’re marching on me, on us?! We are the last people on earth they should be marching on!”

Patiently, David talked me down. “You don’t understand, Mike; it’s not about you. They respect you. They like you. They like the clinic. But they’re terrified and desperate and dying, and they’ve got to do something. It’s the white coat they’re marching on. It’s The Establishment, which you represent, like it or not.”

When I first conceived of an AIDS clinic and did the math about the burgeoning epidemic, it was scary how many patients would need care. Knowing that The 1917 Clinic couldn’t serve them all, I devised training sessions for other providers called “What Every Physician Should Know about HIV.” The training was offered at gatherings of primary care physicians, medical association meetings, and hospital grand rounds. Basically it was me with a microphone, posing my questions and the audience’s questions to an HIV/AIDS patient—very often, David. Audiences were rapt as he described his background, including his hitch as a military fighter pilot, and his life since contracting the virus. He wasn’t shy about nosy questions or squeamish about clinical ones. He never lapsed into self-pity. Only occasionally would he tear up when speaking of friends that AIDS had claimed; by then, many of the rest of us were too teary-eyed to notice.

I never will forget the end of one session when, before an audience of 500 physicians at the State Medical Association annual meeting in Montgomery, I asked David if he had any parting message. “We live in a very religious society,” he observed, “and most of the people in this part of the country believe strongly in Jesus Christ. If anybody was to ask me how to find Jesus, I would say, ‘You can find him at the University Hospital every day, on the 6th floor providing care for the AIDS patients there. That’s where Jesus lives.’”

In fall 1989, when David was fighting a third episode of PCP, we got him into a study for a potent new drug. In his case, it was too potent; the drug killed off so many of the infectious microorganisms so fast that David’s lungs became inflamed and further compromised. As he struggled to breathe, we put him in the ICU with a mask to deliver more oxygen.

Nowadays, when we use that potent drug on PCP patients, we know to administer steroids in advance to protect the lungs against inflammation. In David’s day, we didn’t know that—that, and so much more.

David had made his wishes clear: “No more ventilators, Mike.” No putting him on a breathing machine when he became unable to breathe for himself—and we both knew that time might be near. Before departing for Louisville to spend Thanksgiving with family, I looked in on David and found him sitting up in bed in the ICU wearing a full oxygen mask covering most of his face. Knowing he couldn’t speak through the mask, I said a few words and gave him a wave. David raised a gaunt arm and flashed me a thumbs-up sign. At that moment, I could see him in his flight suit, in his F-14 cockpit, in the clouds. On his last mission.

Two days later, the hospital telephoned me at my parents’ home. I knew it was news about David, so I took the call in the back of the house, where my relatives wouldn’t see me sobbing.

I suppose it’s a confession of some kind that, as a straight, happily married man, I want the world to hear me say I really loved David. Love is the only right term. He was a great guy. All these years later, when I think of him, I wonder “what if?”  What if David, and others like him, could have held on for another five years? What if the triple drug cocktail we call HAART (highly active antiretroviral therapy) had been developed sooner? What if my progress in the lab had been faster, or I had worked harder or smarter?

Then, I swear, I actually hear David’s voice: “Mike, it’s not about you.”

 

From Chapter 9

Tom Blount (is) a tall, soft-spoken gentleman with a goatee and wire-rimmed spectacles. Tom’s family owned a prosperous construction business in Montgomery and he certainly had the intellect and drive to lead it, had he wished to. Instead, Tom, an architect, settled in Atlanta with his longtime partner, Jim Straley, a landscape architect and graduate student. Tom has a heart bigger than Texas and is one of the most generous men I’ve ever met.  In the late 1980s, when the AIDS epidemic hit Atlanta hard, Tom tested negative, Jim tested positive—and Tom set out to do everything he could to help Jim and others fight the virus.

By 1991, Tom had helped establish a buyers’ club in Atlanta, called AIDS Treatment Initiatives, and linked up with like-minded organizations in other cities, including Marty Delaney’s group in San Francisco. The clubs helped patients who couldn’t afford new medicines on the market, and connected patients to the “compassionate use” programs that drug companies often set up prior to their product’s FDA approval for sale in the United States.  When Tom invited me to speak at an Atlanta forum, word quickly spread that Birmingham’s 1917 Clinic was gaining access to new drugs that might be able to treat HIV much better than AZT or any of the existing agents.

Within days our phone lines were overwhelmed with calls and I realized I had a different problem: We were going to have too many interested patients. We finally settled on a ratio of two outside patients allowed to enter for each one who came from the Birmingham area.

Some who applied were naïve to therapy. Others had been on AZT in the past and were failing. Among those was Tom Blount’s partner, Jim Straley. At the Atlanta forum, Tom had confided that Jim was exhausting his available options. I had urged Tom to bring Jim to Birmingham for evaluation in our new study, and Jim was one of the first people enrolled.

With the Atlanta recruits, the study quickly filled.  While it was stressful to enroll all these patients and have them return to Birmingham every week for a study visit, the patients were so motivated that very few ever missed an appointment much less a dose of medicine.

To clinicians like me, providing access to studies was a reprieve from helplessness. I’d had my fill of hand-holding, hugging sobbing mothers at the bedside, choking back my own tears.  Against the darkness of death, science represented light, progress, hope.  There was no better tonic for my pain than negotiating a new trial to come to our clinic, then offering spots in the study to patients desperately clinging onto life. For activists like Marty Delaney and Tom Blount, advancing access to drugs was more than a tonic; it was an urgent mission and cause. AIDS Treatment Initiatives, Project Inform, and other groups like them around the country helped legions of HIV-positive people become informed and militant about access to medications. ….

Marty Delaney, Tom Blount, and their fellow activists knew that there were limited slots in clinical studies, and that only a few U.S. cities had sites that hosted trials.  They pushed pharmaceutical companies to expand their compassionate use programs as widely and quickly as drug production would allow, and the FDA to accelerate approval of new drugs. To create more even access, Marty spearheaded a creative solution, the Parallel Track.  While companies continued development of promising new agents through their traditional Phase II and III clinical studies, they would also create a centralized access program that would allow any clinician in practice to sign up for the program and have the drug delivered to his or her clinic for distribution to patients in the most need for access to the drug immediately. But these were institutional solutions, and institutions seldom move quickly.

Tom needed a solution now—or sooner, or yesterday—because his beloved, Jim Straley, was wasting away before his eyes. Jim was like so many other patients at this time: Their disease would almost surely have killed them by the late 1980s but they were saved by AZT.  Then the benefits of AZT became exhausted and they moved on to the next wave of newly released drugs—DDI, DDC, D4T—but the incremental benefit of these drugs when used after AZT failure was small.  Hoffman-La Roche was the first to market with an approved protease inhibitor, saquinavir, but it was so poorly absorbed from the gut that very little drug made it into the circulation. Better, more potent drugs were needed.  And for Jim and many others, there was no time to waste.

Tom and other activists made it their business to know which companies had what drugs in which stages of development, and which providers and trials had the most promising ones. They were relentless in seeking ways to get more drugs sooner for the use of the most desperately ill. This was Tom’s quest on a humanitarian level to help anyone with HIV, and on an excruciatingly personal level to help Jim. In June 1994, when Jim’s numbers disqualified him for inclusion in a study of L524/indinavir, Tom pleaded for an exception to get Jim the drug. I could not support his plea in a conversation with Merck officials. In response, Tom faxed me a four-page letter full of agony, anger, and reproach.

“Only once has Jim been able to qualify for a clinical trial, and now, apparently, he never will have that chance again,” Tom wrote. “Even as inclusion criteria were relaxed, he was always a few T-cells too short….His only hope has been that someone in the medical field would become interested in salvaging his life, his only available avenue is compassionate use, and the most feasible tool is L524…. All we were asking for was 12 days use of this drug, and no matter how rare it is, I can’t believe that Jim’s life has such little value to everyone but me. As long as there is a single dose of L524 that is not critically needed for research (and we both know they are there), I believe that the decision to not allow at least some compassionate use is completely immoral….The really sad thing, personally, about this development is that I truly believe Jim’s life could have been saved by L524.”

Tom admits that he never expected to hear from me again him after the “neck-wringing” (his words) that he gave me in that letter. And he did sound surprised when I telephoned him, to thank him for his insight and candor. I think we each knew the other was trying to act ethically and with good intentions. I never begrudged Tom his view, and I was in awe of his determination. He literally worked every angle to try to get L524 for Jim and others. He worked his connections on the Merck citizens’ advisory board.  He supported an underground effort to manufacture the drug privately. Tom’s father even joined the effort, pleading Tom’s case in a personal note to a friend of his who happened to be Merck’s chairman.

“In late 1994 when I was chasing that drug, I think there were 32 or 33 humans taking it in clinical trials around the country, and through my work I knew 30 of them,” Tom recalls. “I got people to give me a pill or two, to sneak it out of the trial, so that by the end of the year I had a 30-day supply of L524.”

Then, early in January 1995, Tom phoned me to say Jim was on his deathbed. Tom did not say how he got a 30-day supply of L524 and I did not ask—but he wanted a doctor’s opinion on whether he should go ahead and start Jim on the drug, knowing that he might not be able to get any more.  I told him, “Tom, do it.” Even though starting a drug Jim could not continue might have built resistance to further treatment, in Tom’s position, I would have done the same thing. On January 11, Tom gave Jim his first dose of L524, then caught a 7:00 a.m. flight to New Jersey to talk to Merck officials about increasing access to the drug.

In a meeting that included Paul Reider, head of production at Merck, Tom pleaded for a compassionate-use program that would provide L524 immediately to patients who might not live until its FDA approval. Here’s how Tom remembers it:

“Paul argued that Merck’s plants could barely produce enough drug to supply the patients in clinical trials, and could not spare any for other patients. We had intelligence that said Merck did have L524 to spare, perhaps enough for 450 people. I was thinking of Jim and others at death’s door, and I was weeping with rage. I had to leave the meeting to catch a 3:30 p.m. flight, to get home to give Jim his second dose of L524. But as I walked out the door, I turned and pointed at Paul and shouted, ‘We are talking about maybe 450 people, a fully-loaded 747 jet—and it’s going down and you have the possibility to prevent that! Those lives are on you.’”

Tom made it back to Atlanta to give Jim his 6:00 p.m. medication. The next day, as Tom recalls it, “Jim sprang out of bed for the first time in months. And Paul Reider called to tell me that he and other Merck officials had been deeply affected by what I said and they were determined to get the drug out to more people. In a couple of months, they did.” Tom didn’t know until later why his 747 metaphor had hit so hard at Merck. It was because Dr. Irving Sigal—the Merck chemist who was most responsible for the discovery of L524—was on Pan Am Flight 103 on Dec. 21, 1988, when a bomb destroyed the plane over Lockerbie, Scotland, killing all on board.

3 Responses to “The Fight”

  1. Sandra Langston says:

    A magnificent memoir and manifesto by a present-day hero!

  2. Alan Woellhart says:

    All I can ever say about Michael Saag and the whole staff of 1917 Clinic ,is that every time they touched me,it was with hands of love.They cared when I did not.I have grown up with them with the virus that lives in my body,and they have championed me when I just could not.They are one of the greatest treasures in Birmingham,and the world.

  3. Nancy Bradford says:

    What an incredible story & knowing Tom Blount and his family I am moved to tears. Thank God for the determination that the 1917 Clinic, their staff and individuals like Tom showed & continue to act upon to save lives & find a cure for this disease. Sign me up for a book and a donation.

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