Don’t look to Canada, France, or Singapore for a world-class health care system. You can get the best health care in the world right here in the United States, for free. But there’s a catch: You have to be HIV-positive.
Through a combination of federal and state funding, plus some very clever implementation strategies, Americans infected with HIV are eligible for incredibly comprehensive care, even if they are uninsured or underinsured. It’s amazing the program doesn’t get the attention it deserves. In fact, it should be a model for how we treat all patients.
The story begins in the late 1980s, a time when politicians like North Carolina Sen. Jesse Helms were imploring Americans to recognize gay people as “perverted human being[s],” as he put it. You could call Helms a lot of things, but he wasn’t an outlier. Not in 1987, at least. Ninety-five of Helms’ Senate colleagues joined him in banning the Centers for Disease Control and Prevention from funding any program that might “condone homosexual activities.” The legislation made it impossible to deal with the AIDS crisis. It barred the CDC from doing even the bare minimum: recommending that gay men use condoms. In 1980s America, AIDS was gay, and gay was politically toxic.
Teenage, innocent, Midwestern, and hemophiliac, Ryan White attenuated the connection between AIDS and homosexuality in the public mind. White wasn’t just a victim of the disease, he was a victim of discrimination. His school banned him, and he was told his disease was God’s punishment. AIDS advocates seized on White as the new face of the disease, and it worked. It’s tragic that so few young people today know his name, but Ryan White taught Americans that they could fight an epidemic without fighting its victims. He launched a one-boy crusade for AIDS patients, speaking on virtually any program willing to host him, and he saved untold thousands of lives.
Attaching White’s name to AIDS care legislation changed everything. In 1990, Congress passed the Ryan White Act, with only four senators daring to vote “no.” (Helms, of course, was one of them.) The law unleashed a flood of government dollars for treatment.
The money, however, was ahead of the medicine. The first anti-retrovirals were still trickling onto the market, and researchers hadn’t yet figured out that combination therapy, which attacks HIV on several biological fronts, was the only way to make anti-retrovirals truly effective. People were living longer, but they were still dying of AIDS. The money from the Ryan White Act made it possible for clinics to finally provide comprehensive care to AIDS patients. But far from care spanning medication to mental health, “comprehensive care” meant something morbidly different then than it does today.
“Case managers were lining up how patients wanted to be buried, making sure there was someone to care for their children,” says Margaret Hoffman-Terry, current chair of the board of directors for the American Academy of HIV Medicine, who was a medical resident at the time. “It was horrible.”
When effective medicines emerged, a critical decision was made. The Ryan White dollars wouldn’t be poured wholesale into covering drugs. There were too many other needs.
“The smart, talented medical providers and advocates in the field recognized early on the importance of treating the whole patient,” notes Erika Martin, who studies HIV/AIDS care policy at SUNY–Albany. “If someone doesn’t have access to stable housing, or they have food insecurity, or they have a serious mental illness, or struggle with substance abuse, those factors may be more urgent than prescribing HIV medications.”
And so began a one-of-a-kind experiment in caring for a supremely vulnerable group of people. Ryan White funding made it possible for any HIV-positive patient to receive good care.
Did I say “good?” I meant unbelievably great—a model for care that would be the envy of everyone in the country (if they knew about it). Today, during a typical visit to a Ryan White–funded clinic, an HIV-positive patient first sees a teaching nurse who assesses adherence to the medical regimen and ensures that the patient understands any changes to the routine. The nurse makes sure the patient is up to date on vaccines, colonoscopies, mammograms, and other preventive care measures. He reviews annual laboratory tests, including both ordinary bloodwork and tests related to HIV.
Then the patient sees a dietician. (In the early days of the epidemic, when patients could go from diagnosis to death in a matter of months, the dietician fought weight loss. Today, the worry is excessive weight gain.) The patient consults with a psychologist, and a case manager who reviews nonmedical issues like having a job and stable housing. Then, finally, the patient sees the doctor. In all, the average clinic appointment takes more than two hours, approximately eight times as long as an ordinary primary care appointment.
There’s more. Every month, when the patients are not present, the medical team discusses those who might need special attention—patients who have been arrested, fired, or evicted. If a patient misses an appointment, the team calls her, calls her family, calls her employer. If that doesn’t work, a social worker will show up on her doorstep and bring her to the clinic in a cab.
The care varies somewhat by state, and the program isn’t cheap. With more than $2 billion, the program serves about 500,000 patients. (It is, unfortunately, impossible to compare that to the cost of treating other patients, because some Ryan White patients have other insurance while some rely entirely on the program, making it a very difficult sum to break down.) More important than the money, though, are the results, which are impressive. Today, more than 80 percent of patients in the Ryan White program are virally suppressed, which means the infection is controlled to the point that it’s essentially non-infectious. Data on patients outside the program is hard to come by, but their viral suppression rate is likely less than half that of the Ryan White patients. Many of them are both unhealthy and a contagion risk.
In the recent spate of documentaries exploring the disease’s horrifying toll on the United States in the 1980s and 1990s, combination anti-retroviral therapy is usually depicted as the thing that stopped the bleeding. That’s partially true. But the Ryan White program has provided a model for how we could do more than just stanch, and it’s a shame that it hasn’t gotten more credit.
More than anything, the program is a reminder that health care is about much more than drugs. We should already know this: There are effective treatments for many illnesses that continue to ravage humanity. Tuberculosis, a treatable disease, killed 1.7 million people last year worldwide. Diarrhea: 800,000. Malaria: 429,000. We have drugs to treat all of them—we just haven’t effectively applied them.
The solution isn’t better medication—we already know how to manage diabetes—it’s better care. Patients tend to go too long between contact with the health care system. Many don’t understand the disease and how to manage it. Doctors can’t learn enough about individual patients and their particular needs in 15 minutes, so many patients leave the clinic confused and frustrated.
Imagine what a Ryan White Act would do for diabetes. A nurse to explain the disease and address misunderstandings. A caseworker to make sure the patient is retained in care. A doctor whose time is suddenly freed to manage the disease rather than the social issues. Phone calls between visits to monitor compliance with the treatment regimen. A psychologist to deal with depression and hopelessness.
Sadly, chronic disease is the norm in America. Nearly one-half of adults have one or more chronic conditions like obesity, diabetes, and heart disease. Most of those conditions require regular, intensive contact with health care providers. Many of them could have been prevented or delayed with better patient education and monitoring. If you have HIV in conjunction with any of those chronic conditions, you can get the care you need. Otherwise, you’re stuck with the inadequate health care provided to everyone else.
Is the Ryan White program unfair to the rest of us? I suppose you could argue either way. Maybe people with HIV shouldn’t get special privileges. But then again, maybe they should—it’s in everyone’s interest to keep the virus in check. The morality, however, isn’t the point of this article.
Hoffman-Terry explains that “lack of follow-up is our biggest problem in chronic illness.” It’s the simplest fact in health care, but our system is not designed to address it.
The most depressing part of the health care debate in the United States is that it starts and ends with cost. Instead, we should start with needs. The Ryan White program was an experiment. It has proved that we can manage—and nearly defeat—an epidemic with smarter care, patient education, and simple persistence. The program showed what patients need to beat chronic disease.
Let’s start there—with how we can make sure that someone is looking after every patient, making sure they understand their illness and are sticking to their treatment regimen. Then let’s think about cost. Smart health care is expensive, but runaway disease is worse over the long term, both in terms of the economic cost and the human suffering. Just ask the many countries that don’t have comprehensive plans to treat HIV.