Clinical trials are a lifeline for patients who are no longer responding to standard therapies. California was the first state to pass a law that recognizes financial out of pocket expenses as a barrier to clinical trial participation to cancer patients.
Pennsylvania is the second state to pass a similar law.
In 1996, at just 22 years-of-age, diagnosed with triple negative breast cancer, Brenda had just gotten married. The cancer didn’t run in her family and she had a lumpectomy and radiation treatment. She was supposedly cancer-free for seven years. Then, it came back. Again and again… Having been diagnosed six times over the years.
Brenda is now 54 and has been fighting cancer for 32 years.
Traveling to Pittsburgh for treatment until her triple negative breast cancer began building up a resistance to the chemotherapy.
She tells us, “He said there wasn’t anything else that he could do and he recommended that I go to a bigger hospital, a bigger facility.” That’s what led Brenda to Johns Hopkins in Baltimore; a no-brainer decision.
“I have too much to live for. I have children, my husband and I like to ride motorcycles.. and I just love life too much to give up.”
At Johns Hopkins in Baltimore, on an immunotherapy drug, Brenda is now participating in a clinical trial. She gets medicine through a port for 30-minute treatments. Every three weeks she makes the 732 mile round trip, and has been since March, 2013; that’s nearly 100 trips so far, or, just under 70,000 miles in 5.5 years.
Brenda also gets blood work, sees the doctors, has treatments, and gets scans every 12 weeks, traveling with a family member or friend.
But, the treatments are doing wonders, showing there’s no metastatic disease right now, and Brenda says there are virtually no side-effects. Though the treatments have been FDA approved for other types of cancer, they have not been for triple negative breast cancer, and they’re treatments she may have to have for the rest of her life.
But, it’s worth it to her! She says, “I was talking to my doctor there and I said, I just want you to know… I didn’t realize what normal people are supposed to feel like!”
Brian Berchtold tells us, “Having access to doctors and facilities and that kind of drug… it’s hope for them to live out the rest of their lives as well.”
The cost of getting the drugs is not part of the new law. You have to have great insurance or the means of paying for it out of pocket. The drugs on clinical trials are extremely expensive. The actual drug itself is not covered by the insurance companies or by the government; that’s the biggest cost.
The Berchtold’s expenses are out of pocket. Lazarex helps them, saying it’s a very big financial burden. Between co-pays, deductibles, travel expenses… the totals rise upwards of $10,000 per year.
Lazarex is a non-profit organization that has been around for about 12 years, based out of Northern California and founded for the purpose of helping advanced-stage cancer patients navigate through their clinical trials.
Patients from all 50 states, and even 17 different countries are participating in the trials. And, over their 12 years, they have assisted around 4,500 patients by providing financial assistance to cover out-of-pocket expenses for patients and companions.
Dana Dornsife, Chairman and Founder of Lazarex Cancer Fund, says, “When you’ve already got hundreds of thousands of dollars in medical bills and you’ve really exhausted your financial resources, that is a number that is really insurmountable.”
Dornsife saying Lazarex’s mission is noble, but not sustainable. “What we do daily is we service the problem, but we’re not fixing it. So this legislative effort… the bill in Pennsylvania, I’ll work with the FDA around their policy language… all in an effort to create a permanent and sustainable change. And create a platform of equitable access for every cancer patient to be able to take advantage of medical breakthroughs in technology available in clinical trials.”
Though they’re trying to ease the financial burden of so many people, Dana says efforts to decentralize clinical trials are several years away.