[captionpix imgsrc=”http://lucindaporterrn.com/wp-content/uploads/2013/04/solution.jpg” captiontext=”Image courtesy of scottchan/FreeDigitalPhotos.net”] I’ve been mulling over a recent post from one of the hepatitis C groups I belong to. Someone brought up the distressing subject of what to do about ignorance, particularly when the ignorance is coming from a medical professional. Trying to explain that she no longer had hepatitis C, her doctor refused to believe her, despite the fact that her gastroenterologist had pronounced her as “cured.”
Sadly, false information about hepatitis C, particularly when coming from a physician or nurse, is a tragic reality. As patients, we are vulnerable. We put our care in their hands. We are powerless over what is documented. We can spend our lives trying to right these wrongs, but those who are sick have little energy to do so—especially if their priority is to get through the day.
We can change this. One might argue that it shouldn’t be up to us, but if we don’t advocate for ourselves and others who are affected by hepatitis C, who will? Patient advocacy and activism save lives. From Margaret Sanger who fought for women’s right to birth control, to the brave warriors of Act Up who fought for HIV treatment, the medical institution was changed. Every time we educate, we make a difference.
As for being too sick to act, tell that to the earliest warriors in Act Up, those dying from AIDS who placed their fragile bodies on the line. Some were arrested, carried away like cargo. The movie, How to Survive a Plague is a powerful statement of what we can do when we decide to.
There are many ways to practice activism and advocacy. For twenty years, the Treatment Action Group (TAG) has been working to end AIDS. TAG also provides fabulous information about hepatitis C and TB. TAG is another example of what we can do when we decide to.
Want to be part of the solution? Get involved. There are many fine hepatitis C advocacy groups, but probably the best place to start is the National Viral Hepatitis Roundtable. Together we make a difference.