‘Dallas Buyers Club’ highlights patient advocacy’s role during HIV/AIDS epidemic

Since the emergence of HIV, the real life stories of many AIDS patients have become fodder for movie magic.

A great example can be seen in the latest film Dallas Buyers Club, which profiles the life of Ron Woodroof – a Texas cowboy and drug user who was diagnosed with AIDS in the 1980s.

Initially given 30 days to live, Woodroof – portrayed by Matthew McConaughey – begins taking azidothymidine (AZT), the only HIV drug legally available in America at the time.  But after AZT causes his health to deteriorate even further, Woodroof begins conducting his own research into the disease and decides to head down to Mexico, to procure antiviral medications that were not yet approved in the United States.

Woodroof goes on to travel the world, searching for medications that will keep him alive, and as a result, the Dallas Buyers Club is formed.  With the help of a doctor and another patient, Woodroof begins selling smuggled drugs out of a motel in Dallas, providing HIV-positive patients with desperately-needed alternative forms of treatment for their disease.

According to one infectious disease expert, the storyline closely reflects the real life events of Ron Woodroof and provides a great example of how patient advocacy hastened the development of effective HIV medications during the early years of the outbreak.

“I think (the movie) is more interesting from the perspective of patient advocacy,” Dr. Demetre Daskalakis, medical director of ambulatory HIV services at Mount Sinai Hospital and associate professor of medicine and infectious diseases at Icahn School of Medicine, told FoxNews.com.  “The patients who were living with HIV pushed the agenda way faster and way harder than those with any other disease….People really stepped up and did things to try to prolong their survival and the survival of their friends.”

Throughout the 1980s and most of the 1990s, a diagnosis of HIV/AIDS was considered a death sentence.  After the first case of AIDS was reported in 1981, there were essentially no treatments for the infection until 1986 – when the failed cancer drug AZT was found to successfully treat HIV during a clinical trial.

Yet, once it was discovered, AZT was the only legally approved AIDS treatment throughout much of the 1990s.

During this time, many HIV patient advocacy groups formed across the United States in order to further research into the disease.  The most notable of these groups was the AIDS Coalition to Unleash Power (ACT UP), which was organized in New York in 1987.  In just over a year, ACT UP grew to include more than a hundred chapters throughout the country.

In order to get their message heard, ACT UP went to extremes.  In one famous incident, members of the organization stormed New York City’s St. Patrick’s Cathedral during mass to protest the Catholic Church’s stance against safe sex education. On another occasion, they even went so far as to sprinkle the ashes of people who had died of AIDS on the lawn of the White House.

While many considered the actions of ACT UP to be radical, the activist group accomplished a number of significant changes throughout its history.  Through the efforts of its members, ACT UP was ultimately responsible for lowering the price of HIV drugs, transforming the U.S. Food and Drug Administration’s drug approval process and pushing for the inclusion of people with AIDS in drug trials.

“ACT UP really did big demonstrations, very dramatic demonstrations to make their point,” Daskalakis said.  “Things like throwing blood, burning effigies to make it clear people were dying.  The history of HIV is interesting because people really took their destiny into their own hands, because there wasn’t much out there in the early days of the infection.”

Then in 1996, AIDS patients and advocacy groups experienced a dream come true.  Doctors began prescribing a drug cocktail with new protease inhibitors, capable of controlling HIV in the body.  This marked a major milestone for HIV treatment, as it transformed the infection from a deadly disease to a chronic illness that could be managed from day-to-day.

Now, there are a number of different drug options for HIV patients, and many individuals only need to take one pill a day to control their disease.  But while HIV/AIDS is no longer the death sentence it once was, Daskalakis said it’s naïve to think that HIV is no longer a threat, as many new patients are infected every day and drug adherence can sometimes be difficult for people.

So although Dallas Buyers Club highlights how far the medical community has come, Daskalakis said there are still three major accomplishments that researchers need to make in order to completely eradicate the dangers associated with HIV.

“Really, we’re talking cure,” Daskalakis said.  “For people living with HIV, we need to find a way to cure them.  Right now, we can make the virus undetectable, but we can’t get rid of it. Second, we need to figure out how to prevent HIV infection in ways that make biological and behavioral sense.  And finally, we need a vaccine to prevent acquisition.”