You know how you sometimes have thoughts that float around in your head – perhaps of the not-so-politically correct variety – but you let them go because you wonder what people would think if you voiced them aloud? A visit to nearly any of the articles written by Duncan Cross is like a breath of fresh air because he gives voice to those thoughts. He’s written an article questioning the merit of the various disease advocate organizations. Duncan’s article is particularly insightful because it comes from the perspective of a patient, and it highlights the tangible needs of patients – needs that often go far beyond the search for a cure.
Don’t get me wrong – I’m very much in support of organizations that focus on finding cures for medical conditions. I’m thrilled that Obama is allowing federal funding for stem cell research, and I am glad that there are doctors and scientists who devote their lives to curing disease. My own family hopes every day for an eventual cure for kidney failure that doesn’t involve a lifetime of immune-suppressing drugs, so that my father could be healthy again. But when it comes to the lives of individual people who are battling illnesses, there are plenty of needs that are not met by the big disease advocacy organizations.
Cowboys Against Cancer, one of Jay’s parents’ favorite organizations, is an example of a group that is working to address immediate needs of cancer patients. They are based in a small town, and raise money for local cancer patients to pay for expenses associated with travel to larger cities for cancer treatment. I am impressed by the local focus and the organization’s efforts to tackle a pressing and immediate challenge facing cancer patients.
I think that the big disease advocacy groups that are focused on finding cures do provide an important service. Raising money to find a cure is important in and of itself, and there’s also the camaraderie and support that organizations like this provide. I participated in one of those walk/run events a few years ago in Denver, and it was obvious that it was a huge morale booster for the women (and men) who participated, especially those who were still going through treatment. But Duncan’s article serves as a reminder that just donating money to a disease advocacy organization isn’t all that is needed. And there are plenty of smaller, lesser-known organizations that are working to address other, more tangible needs that sick people face.
And while we’re on the topic of immediate needs, check out this article by Ill and Uninsured, about a 15 hour wait in a hospital emergency room. The description of what it’s like to be in serious pain without health insurance is gut-wrenching. The article raises so many issues: under-staffing in emergency rooms, people who go to the ER with a sore throat because they don’t know where else to go, a lack of viable health care options for people without health insurance, and the patient perspective of what it’s like to be sick and try to navigate the health care system without health insurance. Definitely worth a read.
I found these articles in this week’s Grand Rounds, hosted at Code Blog.