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Posted on Sat, May 29, 2010 : 10:20 a.m.

Ann Arbor resident to be featured on PBS show about surviving cancer with University of Michigan therapy

By Tina Reed

Cure for Casualties from Bryce Phillips on Vimeo.


This weekend will be a big one for Ann Arbor resident Betsy de Parry.

For one, de Parry - a lymphoma survivor turned author - will be celebrating her 60th birthday. It's a milestone doctors once warned her she might not live to see after being diagnosed with Non-Hodgkin's lymphoma more than eight years ago.

And this weekend, the story of her survival and how a treatment created by University of Michigan researchers helped to save her life, will begin airing in different markets around the country on the Public Broadcasting Service.

The segment, part of the PBS show called "A Wider World," is scheduled to air in southeast Michigan on Tuesday, June 1 at 5.30 p.m. on WTVS, Detroit Public TV, Channel 56.

"All patients deserve to know their treatment options," de Parry said.

Betsy de Parry and her husband Alex de Parry are perhaps better known in Ann Arbor for running the real estate development company he started in town called Ann Arbor Builders, Inc. Betsy de Parry serves as vice president of marketing and sales there.

But in her other life, de Parry has become deeply involved in spreading awareness of the importance of cancer patients learning how to educate and advocate for themselves. De Parry has served as the public policy director for the group Patients Against Lymphoma and regularly writes in online forums and speaks to cancer groups.

Her book, called "The Roller Coaster Chronicles," was based on her experiences and the emotions she felt following the phone call informing her she'd been diagnosed with lymphoma. 

"Early on, I had no idea how to navigate through the medical system," de Parry said. "That call literally plunged Alex and I into completely unfamiliar territory."

After she was diagnosed, her oncologist put her through treatments of chemotherapy, but her body didn't respond.

Her particular form of Non-Hodgkin's lymphoma was considered incurable until a new therapy called radioimmunotherapy was approved by the U.S. Food and Drug Administration. The targeted therapy was co-developed by University of Michigan physicians Dr. Mark Kaminski and Dr. Richard Wahl, who is now at Johns Hopkins University.

She has been in remission for nearly eight years and describes her health as "perfect."

Although the therapy has been shown to help certain lymphoma patients when their lymphoma returned after previous therapies, Kaminski said it's is grossly underutilized.

There are a host of reasons why oncologists might choose a particular treatment. It could be the individual patient, or it could be the treatment the oncologist is familiar or most comfortable with.

Or in the end, Kaminski said, it could be the fact that the treatment requires offices without a license to administer drugs that use radiation to refer patients to offices who do — creating a financial disincentive to recommend the therapy.

It's a huge hurdle for getting more patients who might benefit from the treatment to even hear about it in the first place, he said.

"So far, medical oncologists haven't been talking about this," Kaminski said. "Who else is going to education the patients? Sometimes, patient advocates like her are the best kind."

A few years ago, Medicare was going to change reimbursement for the therapy to about $10,000 less than it costs hospitals to administer, he said. Kaminski credits de Parry's work testifying in Washington at the time. 

"If it weren't for her, these drugs wouldn't be here," Kaminski said.

Betsy de Parry said her experience highlights the importance of being well-informed of all the options for a particular condition. She also stressed the importance of reaching out to other patients who have been there.

"Cancer can be a very isolating experience," she said. "Sometimes hearing the experience of others can be comforting."

Last summer, film students at the Savannah College of Art and Design spent six weeks filming de Parry's story in Georgia. She recently learned their work would be featured on the PBS show.

Alex de Parry praised his wife's dedication to raising awareness for cancer patients to do their homework and advocate for themselves at a time they feel the worst. 

"I think that's one of the problems," he said. But it's important, he said, for "people to delve in and say, 'What are my options?'"

Tina Reed covers health and the environment for AnnArbor.com. You can reach her at tinareed@annarbor.com, call her at 734-623-2535 or find her on Twitter @TreedinAA.

Comments

darlene

Mon, May 31, 2010 : 3:09 p.m.

Thank you for doing a story such as this. Dr. Richard Wahl is the greatest. I'm now part of his team and it took me weeks to find this type of therapy. I'm hoping stories such as this will help those after me not spend weeks and many stressful hours trying to figure out what to do. Many don't understand that can be the most stressful part. Once you know you can assemble your team and face it head on with your family, friends and such great staff such as U of M. Still surviving!!!

Dan Simms

Sun, May 30, 2010 : 5:29 p.m.

You want to do your homework, go to a naturopathic doctor. Don't waste your time on poisons. Look into baking soda, spices, herbs, and peppers. You need things to CLEAN your body from the junk food you've been putting into it. And once you're educated on how to eat HEALTHY, you won't get sick again. It disgusts me how doctors in this country are so closed minded, and think putting radiation into the body is what's needed. Pure incompetence and negligence. I wonder just how many people it's killed.

Betsy de Parry

Sat, May 29, 2010 : 4:55 p.m.

Thank you, Tina, for reporting this story. It's my hope that our experience will be encouraging and comforting to those who face similar challenges. If any of your readers want to learn more about radioimmunotherapy - what it is, how it works, and why it's underutilized - there is a wealth of information on my website at http://www.lymphomabook.com/RIT.html Betsy de Parry

AlphaAlpha

Sat, May 29, 2010 : 9:53 a.m.

"Although the therapy has been shown to help [...] it is grossly underutilized [...] the treatment requires offices without a license [...] to refer patients to offices who do creating a financial disincentive to recommend the therapy."