Patients on a Mission

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Maryland Gov. Larry Hogan, Jr., became an instant anti-cancer activist over the summer. The level of attention he received is atypical for most patients advocating against their own diseases. But patients acting on an intense drive to fight back against a serious or rare illness are not unusual. 

As a storyteller about health, I’ve seen and written about this zeal among lower profile people many times. Often, the battle becomes a personal mission in response to a life reshaped by ill health.

On a grand scale 

You need not be a public figure to devote yourself to fighting a serious disease, but it does help a lot. As governor, for example, Hogan could advocate more widely than most individuals can. He did admirable work even during his four months of treatment. 

Soon after receiving a diagnosis of non-Hodgkin lymphoma, he took his own cancer fight public. With easy access to the media and major public events, Hogan kept the spotlight shining on cancer awareness and fundraising for research. 

Although chemotherapy had transformed his appearance, he briefed reporters on the progress of his treatment, knowing the information would reach people all across Maryland. Hogan’s cancer-fighting message took him to Orioles, Ravens and Redskins games, where he appeared on the field before thousands of fans.

Hogan, like other patients with serious illnesses, wants to prevent others, especially children, from struggling as he has. The governor was able to bring children with cancer with him to the baseball and football field. He partnered with the Orioles on raising $50,000 for the Leukemia & Lymphoma Society and Ronald McDonald House Charities, which serve families of children with cancer.  

“I never expected to be in this position,” Hogan told the Washington Post. “But having gone through this experience myself just opened up a whole new world.  I’m part of the club. I’m one of them.” 

Beyond the limelight

Members of “the club” find themselves in a new world where illness looms large. Urban or rural, young or old, men and women, whites and people of color, they pursue the same kind of goals outside the limelight that Hogan pursued before large audiences.

Many patients organize their own fundraisers among their friends, family, neighbors and co-workers. Pub crawls, zumba marathons, and mass rummage sales are some of the more imaginative formats alongside walks and galas.

Patients also take their stories public. Some work hard to get the media to interview them, hoping others will seek diagnosis and treatment. Many speak out in smaller forums such as local support groups or online communities that give them direct access to other people facing the same illness. Doing so conveys a crucial message:  You are not alone. Their empathy and experience bring others hope.

Some called to action by illness lobby for increased federal funding which is vital to advancing medical research. Some even travel to Washington to try to persuade their representatives about legislation or inform regulators at the Food and Drug Administration about patient experiences with drugs and medical devices. Navigating Capitol Hill or the halls of FDA in wheelchairs, breathing with supplemental oxygen or both doesn’t stop the most dedicated of these people.

Often patients participate in research trials themselves. Despite the risks, these volunteers feel an obligation to be part of the quest for new knowledge and, ultimately, cures.

No matter who you are — governor or private citizen — confronting a life-changing illness exposes your underlying human vulnerability. Fortunately, it also ignites in many people the desire to help others in the same situation. Seriously ill people who fight back with dignity and grit are inspiring examples of self-empowerment in the face of danger.  

Do you think health organizations are creating enough opportunities for them to be heard?

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