Brain tumor advocacy in full swing: it's time to educate Congress
Apologies: This was typed on my iPad and I didn't have time to do much editing.
PHOTO: I met this cool advocate at a brain tumor walk
I'm in Washington DC today to do something pretty amazing.
I'm working with the National Brain Tumor Society to lobby Congress for two things:
Lobby our elected leaders to focus on brain tumor research
Ask for "chemo parity" for cancer patients
What does all this mean? Item one is pretty obvious, but it has its quirks.
Brain tumor research
Between Livestrong, the National Cancer Institute and the American Cancer Society we already have a lot of lobbying going on to focus on the fight for cancer. But brain tumors/cancer is a different beast. We are an orphan cancer--making up just 1% of all cancers diagnosed in the United States. And with a small group of "survivors," and an even smaller number of advocates, we don't get the attention we deserve.
But why focus on a cancer that doesn't impact as many people?
For one thing, treatment options are in a completely different world than other cancers. When the breast cancer community lobbies for money and research, drugs resulting from that research do, at times, end up helping patients with other cancers. It is rare to find a similar cross-over to brain cancer. Yes, Avastin is showing to be helpful to those with lung, breast and brain cancer, but the results are not conclusive. (Don't get me wrong, I'd totally take Avastin if/-when my tumor progressed.)
Additionally, we have the whole "blood-brain barrier" issue. Before drugs can be designed to combat our disease, they first need to be disguised as something that can break through the biological equivalent of a firewall designed to protect our body's most vital organ from infection.
Lastly, malignant or not, there are more than 130 different types of brain tumors and there will be no one magical pill to destroy them all.
Chemo parity... Or, why our health care system is discriminating against brain cancer patients
When the majority of cancer patients are on chemotherapy, they are hooked up to a drug intravenously, and treated within a hospital setting. They may go home each day after treatment, but because they receive treatment in the clinic through an IV, treatment is covered under the "hospital" portion of their health care plan.
This is not the case for patients with brain cancer (and maintenance chemo for some other cancers).
Our chemotherapy comes in the form of a pill called Temodar. We take oral chemotherapy because it is designed to disguise itself as a medication designed to break our blood-brain barrier. We can't take this same medication in the IV format. (Though I've heard we can... But I have yet to meet a patient who was administered Temodar in this fashion.)
Chemo in a pill is covered by the pharmaceutical benefit part of our health care plans. This is often very expensive and makes Temodar inaccessible to patients who have bad medical plans, are low-income, self-employed, or are young adults who are no longer covered by their parents but still in that in-between stage where they have yet to find a career with medical benefits.
I know for me, even though I lost my job after being diagnosed (long story), I was able to continue my health plan through COBRA (the Consolidated Omnibus Recovery Act) but it still cost me $550 each month. That didn't include co-pays and prescription drugs--they were extra. My generic drugs were $5 (not so bad) and my brand name drugs (like Temodar) were $35. Considering I was an unemployed brain cancer patient on disability, every dollar added up--and there were many pills I needed to buy.
But I had great coverage! There are many other people who have to pay hundreds of dollars each month. There are people who are mortgaging their homes just to get their kids the Temodar they need. Some people are skipping their treatment and using it only every other month.So you can imagine what a blessing it would be to brain cancer patients everywhere if our chemotherapy was treated the same way as chemo for every other cancer patient. For reasons unknown to me, we are being discriminated against, and this is not OK.
