My friend Jennifer is a fellow Crohn's patient. She has a far worse case of the disease than I. She has gastroparesis, which means that her stomach muscles are dying and that she cannot process food very well. Jennifer throws up a lot; if she were to give in to holiday temptations to eat a potato latke, she would be sick for days. In a few years, she will die.
Jennifer is also a true friend of patients. She runs an organization called Advocacy for Patients with Chronic Illnesses. Advocacy for Patients fights big insurance companies when they deny medically necessary treatments, or when they claim that a new (and expensive) disease is a pre-existing condition. They fight insurance companies when they try to kick the chronically ill off their rolls. And they fight school districts which fail to provide reasonable accommodations for chronically ill students. And they win.
Unfortunately, Jennifer is the organization. She fights insurance companies from her bathroom. She gets other patients expensive medicine--insurance companies like to deny Remicade, which is effective but can cost up to $4,000 a dose. She gets the kid a school is trying to get rid of by not allowing them to go to the bathroom during class an education. And she points people in the right direction, and helps them find medical care.
Because patients are frequently broken in more ways than one by medical bills, Jennifer does all this without charging a cent to her clients. She is funded through a mix of grants and private donations. She raises enough for the organization to get by. But she doesn't raise enough to hire a second lawyer; at the moment, she can't afford to train a successor. If Jennifer dies tomorrow, her organization will probably die with her.
Jennifer's dream is for her organization to live on. She wants to hire a lawyer and train them on how to win care for patients. But, at the moment, her organization doesn't have the funds to do that.
So whether the chronically ill will continue to have this vital resource is up to us. We can either raise the funds to make sure that those who get ill after us have the resources we had, or we can watch as they are denied the care they need by big insurance. In the spirit of the holiday season, please consider donating (click on the PayPal link). Help make Jennifer's dying wish come true.
Disclaimer: I am not a client of Jennifer's organization. But I do know people who are. I know enough to fight the insurance companies myself, but many people don't have the advantages (education) I have. Nor am I an employee, or representative, of her organization. I am just a Crohn's patient who doesn't want to see one of the few great resources we have go away