The Cost of Treatment

With efforts underway to modify or repeal the Affordable Care Act (ACA), also known as Obamacare, many cancer patients have spoken out about how affordable health insurance kept them from financial ruin. Magnifying their voices are the surveys and studies that illustrate the devastating monetary toll a cancer diagnosis can bring. Researchers have attempted to capture this distress with the term “financial toxicity,” which places the effect of high treatment costs on quality of life on an equal footing with the toxicity of the treatments themselves.

I explore the ramifications of the costs of cancer treatment in the Winter 2017/2018 issue of Cancer Today.

Here’s an excerpt:

When Candace Henley was diagnosed with colorectal cancer in June 2003, her fear was tempered by the knowledge that she had good health insurance through her job as a bus driver with the Chicago Transit Authority (CTA).12-the-cost-of-treatment-600x200-WEB

At the time, Henley was 36 and raising five daughters, ages 4 to 15, alone. She had pulled off the American dream: a single-family home with a backyard. “We had a great life,” she recalls. “We had great health insurance. [Everything] was as perfect as it could be.” Her problems began when she didn’t have enough savings to stay afloat financially after her cancer treatments left her unable to work.

Every family that faces cancer experiences the shock of learning that the disease is now at their doorstep. But once the diagnosis is made, paths can quickly diverge. The first fork in the road: whether you have health insurance and what type you have. The second: whether you have savings to cover deductibles and other out-of-pocket expenses.


New Year, New Opportunities

I’m excited to announce that I’ve been asked to be a contributor to I’ve long admired their work, and am pleased to join a team of writers and editors who are committed to helping improve how medical research is promoted in news releases, written about by journalists and understood by the public. The ultimate goal: more educated health consumers who don’t fall prey to “miracle” cures or set their hopes on”groundbreaking” discoveries that are sure to “revolutionize” care–yet have only been tested in mice.

To that end: Here’s my first blog post:

‘Clinically proven’ ear plugs for migraines make news headlines, with little evidence they work

Do you have migraine attacks?

Use a $12 over-the-counter ear plug-type device called MigraineX, a recent news release insisted, and you’ll experience an 81% improvement in weather-related migraine headaches.

Some news organizations took the PR bait.

Read the full post.  And feel free to comment.


Fearless Friends

I met Lori Marx-Rubiner in November 2016 at a two-day Think Tank coordinated and hosted by Dr. Susan Love Research Foundation’s Metastatic Breast Cancer Collateral Damage Project. (My freelance work includes writing and editing for the Foundation.)

As a woman living with metastatic breast cancer and as a breast cancer advocate, Lori was passionate about the Foundation’s project and she spoke eloquently throughout the meeting about her hopes for what the group could accomplish. As we chatted during a break, I had the feeling that had I still lived in Los Angeles we’d have made a coffee date–and kept it.

1.3-cover-fall-2017-158x203-WEBFive months later, at the American Association for Cancer Research (AACR) Annual Meeting 2017, two of the editors of Cancer Today, which is published by the AACR, met Lori and her best friend and fellow advocate AnneMarie Ciccarella. The two women were presenting a poster in a scientific session at the meeting, and as photos from that day attest, they were both beaming with pride. Within weeks, the editors at Cancer Today made the decision to break with protocol and to have the cover of the Fall issue of the magazine feature two survivors—Lori and AnneMarie. I was the lucky journalist asked to tell their story.

I interviewed Lori in early June, before she set off on a bucket-list cruise to Alaska with her husband and son. We made plans for me to follow up with any additional questions that might come up during my reporting. A few weeks later I spoke with AnneMarie. Soon I was rounding out the story with interviews with other researchers and advocates. As I was writing, I learned Lori was in the hospital. Before she had left for Alaska, she had told me her cancer had progressed and she would be starting on a new treatment. But it was no match for her cancer. She transitioned to palliative care.

Lori died on August 2, 2017, less than two months after our interview and while the issue was still in production. Before her death, Lori and AnneMarie decided they wanted the article to run in Cancer Today as it had originally been written. We have honored those wishes. Here’s their story.

A New Look For Clinical Trials

If you wanted to create a playlist of music that would appeal to many different types of people, you probably wouldn’t ask only middle-aged white men in Los Angeles to tell you you their favorite songs. More likely, you’d include people of many different racial and32-clinical-trials-175x175-WEB ethnic backgrounds from all parts of the country: some who grew up with jazz or salsa music, others who were raised on rock ‘n’ roll, and still others who know their Bach from their Beethoven.

Cancer treatments are kind of like a playlist: Not everyone responds to them in the same way. To get clinical trial results that will be applicable to the broadest range of people, researchers need to enroll women and men of different ages and racial backgrounds in their studies. Yet, when you look at a room of clinical trial participants, you typically see a preponderance of higher-income, middle-aged white men, most of  whom don’t have health problems besides their cancer. But what about African-American women with cancer and diabetes? Or elderly Latinos with kidney problems in addition to cancer? Will the treatment be safe or effective for them? If they aren’t included in the clinical trial there is no way to know.

My feature story in the summer issue of Cancer Today explores efforts underway to increase enrollment and widen access to clinical trials. Read my story.

Thyroid Cancer’s Overdiagnosis Problem

Unknown-1For the past three decades, rates of thyroid cancer have risen. According to researchers, better cancer detection accounts for that increase. Women and men diagnosed and successfully treated for thyroid cancer also are likely to attribute their survival to improved detection. Yet the U.S. Preventive Services Task Force advises against routine thyroid cancer screening in people with symptoms.

Read my full article online in the current issue of the Journal of the National Cancer Institute or use:this link


Tackling Cancer in Rural Communities

Seeing this article on improving cancer control in rural communities on the NCI website today, made me decide it was time to post on my blog an article I wrote in 2008 for CR, the precursor to Cancer Today.

It’s nearly a decade later, but the issues remain the same.

The Culture and Cancer of Rural Poverty

Nowhere in America is the connection between rural poverty and cancer as clear-cut as in Appalachia

When Bruce Behringer gave a presentation on cancer last year, he began by telling a story. It started with the number 44.

A road in Appalachia“This,” the cancer researcher said, “was our state’s ranking in cancer incidence from 2000 to 2004.” Behringer, who is the executive director of the Office of Rural and Community Health and Community Partnerships at East Tennessee State University in Johnson City, then showed the number 20. “And this,” he said, “is where we were in 2005.”

But just as Behringer’s audience began to consider this dramatic jump in the state’s cancer diagnosis ranking, an even more alarming number appeared in his next Powerpoint slide: six. “This,” he intoned, “was our state’s ranking in cancer mortality from 2000 to 2004.”

Finally, Behringer showed the number three. “Folks,” he said, “this is not the University of Tennessee’s football ranking. And it’s not the Lady Vols’ rank in basketball. We were No. 3 in the country in cancer mortality in 2005. And that’s not where we want to be.”

Read the full article

Helping Cancer Patients and Caregivers Navigate Immunotherapy Treatment

Immunotherapy is one of the fastest growing areas of cancer research. The Cancer Moonshot 2020 Program calls for the creation of a Cancer Immunotherapy Translational Science Network to develop and implement immune-based approaches for preventing and treating adult and pediatric cancers. There are more than 500 open immunotherapy trials listed on and the list of immunotherapy drugs, as well as the cancers they are approved to treat, keeps growing. Educational programs for cancer patients and caregivers are needed to help them understand how, when, or if immunotherapy should be integrated into their treatment—and how it can be paid for.

I worked with the Cancer Support Community to plan and implement a 2-day Immunotherapy Patient & Caregiver Summit. The meeting, held in November 2016, provided a unique opportunity for immunotherapy patients to share their experiences. It also allowed the Cancer Support Community to identify specific needs and concerns of patients who are on these treatments. This is the article we wrote for the American Journal of Managed Care Evidence-Based Oncology about what we learned.

Rolling Up Her Sleeves

When Dina Mired married Prince Mired bin Raad of Jordan in 1992, she became a princess. Five years later, their son, Rakan, was diagnosed with acute lymphoblastic leukemia a few days before his second birthday. That’s when Mired gained a new title: cancer careg58-rolling-up-her-sleeves-175x263-WEBiver. The ones she earned after that: cancer foundation director, advocate, fundraiser.

For the Spring 2017 issue of Cancer Today,  I spoke with Princess Mired about her work to improve cancer care in Jordan. We spoke shortly after she was elected president of the Union for International Cancer Control (UICC). When she moves into the position in 2018, Mired will be the first Arab and the first nonmedical professional to be president of the UICC.

Here’s the story.

Going Full Bore

For the Winter 2016/2017 issue of Cancer Today, I profiled Susan Leighton, a 19-year survivor and powerful advocate for ovarian cancer research.

Leightonwinter-cover-susan-leighton-158x203-web has shared her ovarian cancer story too many times to count. She’s spoken in rooms filled with medical students, educating them about ovarian cancer’s symptoms. She’s testified before Congress to garner support for ovarian cancer research. She’s personified hope on telephone calls with women newly diagnosed with cancer or those who have had a recurrence. Her story is backed by a vast knowledge of ovarian cancer science and bolstered by its uniqueness: There are not many 19-year ovarian cancer survivors.

Read the story