New law helps Whitefish woman battle cancer

A Whitefish woman who was diagnosed with cancer two months ago is the first Montanan to tap into a new state law requiring insurance coverage for patients participating in clinical trials.

Jennifer Burrough, 42, has chronic myeloid leukemia and was denied insurance coverage three times for a new oral chemotherapy drug doctors deemed her best option for treatment.

Then Senate Bill 55 passed the Montana Legislature.

Sponsored by state Sen. Christine Kaufmann, D-Helena, the new law increases access to new treatments for Montana cancer patients.

In Burrough’s case the law requires her insurance carrier, Blue Cross Blue Shield of Montana, to cover the routine care that allows her to participate in a clinical trial for a new drug called ponatinib.

The treatment is a third-generation oral drug that’s showing promising results for long-term remission of chronic myeloid leukemia, a cancer that starts in the bone marrow and invades the blood.

Trial sponsors, typically pharmaceutical companies, cover the costs of experimental drugs. Ponatinib costs about $160,000 a year. But there are many other costs related to a clinical trial, such as blood tests and biopsies, and the new law now prohibits insurance companies from not paying for those routine related costs.

The drug Burrough is taking has the highest response rate — up to 95 percent effectiveness — of any drugs in its class. After taking ponatinib for less than two weeks her white blood cell count already is within the normal range.

Burrough said she was prepared to “settle” for the next best option, a less expensive and less effective drug, when a close friend encouraged her to pursue an appeal of Blue Cross Blue Shield’s decision.

She quickly filed a complaint with the Montana Commissioner of Securities and Insurance, and during that process learned about the pending legislation.

Burrough shared her experience in a letter of thanks that was read at a ceremony in late April when Gov. Steve Bullock signed the new law.

“Cancer patients should be able to focus all their energy on getting well, not having to fight with insurance companies over who is footing the bill for their basic care,” Bullock said.

Burrough said she’s “incredibly grateful” for the legislation that allows cancer patients the access they need to cutting-edge treatments and protocols.

A busy wife and mother of three children ages 12, 10 and 7, Burrough said prior to her diagnosis she experienced heart palpitations and felt “super anxious,” but also was fatigued to the point of feeling groggy.

“It was like I was drugged almost,” she recalled.

She let several days go by, and when the symptoms lingered she headed to the emergency room. After 10 days of testing and rounds of high-dose antibiotics to fight off any possible infections, she tested positive for mononucleosis.

But her pathologist was seeing cells that weren’t supposed to be there, and it wasn’t long before further testing revealed the leukemia.

Burrough decided to see a specialist at MD Anderson Cancer Center — known for its expertise in chronic myeloid leukemia — to confirm the diagnosis and explore treatment options.

Though she speaks hopefully and matter-of-factly about her disease, Burrough admits the diagnosis was both shocking and emotional.

“I had a day where I was very emotional,” she said.

Her father, who had lived an extremely healthy lifestyle, died of renal cell carcinoma last fall.

“It was scary for all of us,” she said about her diagnosis. “The kids watched my father die and I was concerned they’d picture a similar fate for me. But they have done very well.”

She and her husband, Steven, have lived in Whitefish for 14 years. Burrough has been active in the community, serving on boards for the Whitefish Figure Skating Club and Whitefish Christian Academy.

Burrough will have to take the cancer drug for the rest of her life, she said, but as long as she responds and meets the benchmarks for improvement, she will only have to travel to Houston periodically.

“The prognosis is very good,” she said. “My life span should be very normal.”

She’s dealing with some side effects from the experimental drug, but “it could be a whole lot worse,” she said.

“It feels good to be down the road a ways,” Burrough said about her treatment. “I have a team of people who have been amazing.”

She hopes her perseverance, and the persistence of her good friend Diana, will be an example to others seeking the cancer treatment they need.

“I hope this helps empower other people. It empowered me,” she said. “It’s so easy to take no for an answer, and it makes me angry there are patients who don’t have the energy or the time” to fight for approval from their insurance companies.

“The squeaky wheel does get the grease,” she added.

Features editor Lynnette Hintze may be reached at 758-4421 or by email at lhintze@dailyinterlake.com