Dallas Buyers Club – A Study In Patient Advocacy

The Dallas Buyers Club has received praise and recognition from the Hollywood elite, but the larger story of the power of consumer advocacy and patients banding together to get access to the health care they need deserves a closer examination.

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Dallas Buyers Club drives home the importance of patient empowerment

The central plot revolves around Ron Woodroof, a heterosexual Texas rodeo rider who contracts AIDS around 1985. By the time Woodroof visits a doctor for his symptoms, he’s given 30 days to live.

Absorbing the gravity of his situation, the cowboy teams up with an unlikely partner – Rayon, a fictitious transgender who also has AIDS.  Together, they begin to distribute to desperate patients medications, proteins, vitamins and supplements available in other countries, but not yet approved by the Federal Drug Administration.

Along the way, Woodroof is thwarted not only by his local doctors and law officials, but also by the FDA, the Drug Enforcement Agency, the FBI and the IRS. Woodroof counters with lawsuits of his own, while defiantly jet-setting to various countries to procure drugs that will keep him and his friends alive.

What’s poignant is how a community of disenfranchised patients rallying together to pour over medical journals, share research and, maybe most importantly, support one another can help to change a system.

While the health care industry exists to serve patients, it’s disconcerting how little influence the average consumer has in the important decisions that affect them.

Consider this. Employers pick the health insurance plans employees can select. Those health plans choose which doctors and health providers can be seen. Patients often don’t even know the most basic information about health care transactions: How much will this procedure cost?  How good is this hospital?

But it goes deeper still. The power balance in the doctor-patient relationship has historically skewed towards the physician. Patient records are kept in the domain of the doctor’s office and can be hard to access. Medical research is rife with jargon that makes it nearly incomprehensible to the average reader. Indeed, even collaboration between doctor and patient is often discouraged. Patients who walk into an appointment with printed out pages from the internet are often labeled “a nuisance” or “difficult.”

One single factor may finally bring equality – cost. It’s become evident that employers can’t keep footing the bill for their workers’ health care. At the same time, policy changes like the Affordable Care Act are mandating that all Americans carry insurance – even while they might not be able to afford it. The solution for both is high-deductible plans, which rely on more out-of-pocket costs for the policyholder.

That punch to the pocketbook, though, may finally bring attention to the fact that customer service and market-driven economics have largely been absent in the health care industry. The Dallas Buyers Club drives home the fact that it isn’t until people are personally impacted by a broken system that they realize how much needs to change.

Yet, for many, advocacy begins when they get sick or illness strikes a loved one. Nothing makes one care more about his health than when he finds out it’s failing. When fear gives way to determination, people find the strength to organize and fight back. This is how Woodroof was able to transform himself from a staunch homophobe into an unlikely hero of the gay community in Dallas.

What’s exciting – and what didn’t exist during the early days of the AIDS epidemic – is the lightning fast speed and scale that the internet delivers. More people can find each other online and share what they know. Technology can help organize that knowledge, make it searchable and push it across the globe within seconds.

Indeed, a whole world of social networking exists today for patients who seek the comfort of those who are like them. There’s the site IHadCancer or the Crohn’s community, Crohnology. The headline of that website reads: “What if we could learn from the collective experience of patients everywhere?”

There’s proof these online communities have a significant impact on people’s heath, too. A group of women with spontaneous coronary artery dissection (SCAD) found each other online and formed a discussion board. The disease is extremely rare and kills about 50 percent of the people diagnosed with it. The sheer number of members was greater than most experts believed even had the disease. Together, the group was able to lobby a cardiologist at the Mayo Clinic to begin researching their condition. In just a couple of weeks, the medical researchers found all the volunteers they needed through the community board to launch a pilot study.

That’s what makes digital health companies the darlings of investors and the business media. Cost estimation tools, scheduling portals and patient-accessible EMRs are considered disruptive now, but they will eventually lead to a system that is user-friendly and easy to navigate.

And that’s what we need, a system that champions informed patients, because the ultimate lesson from the Dallas Buyers Club is that an empowered patient is a healthier patient.  Take Woodroof, he went on to live seven more years.