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Young cancer survivor lobbies Hochul on a bill that would require biomarker testing coverage

Charlotte Carlin holds a picture that accompanied her letter to Gov. Kathy Hochul, asking her to sign the biomarker testing bill. Her mother, Mary Carlin, is at left.
Karen DeWitt
/
New York State Public Radio
Charlotte Carlin holds a picture that accompanied her letter to Gov. Kathy Hochul, asking her to sign the biomarker testing bill. Her mother, Mary Carlin, is at left.

A bill that would require private health insurance and Medicaid to pay for biomarker testing for cancer patients will soon be sent to Gov. Kathy Hochul’s desk — and a 10-year-old cancer survivor may be the bill’s most effective lobbyist.

Charlotte Carlin was diagnosed with pediatric low-grade glioma, a kind of brain cancer, when she was 4. She underwent a nine-hour operation, and today, she is healthy.

During a visit with Charlotte and her mother, Mary Carlin, on a steamy summer morning at their home in a Capital Region suburb, the soon-to-be sixth-grader said she doesn’t remember much about her illness.

She’d much rather talk about her favorite video games and her plans to become an astronaut when she grows up. She said she’s already planning to go to Embry-Riddle Aeronautical University when she’s a bit older.

“I'm going to get an engineering degree so I can become an astronaut,” Charlotte said. “And I might, like maybe, go to flight school.”

But she does want people to know at least one thing about her experience. She even included it in a recent handwritten letter to Hochul.

A letter from 10-year-old Charlotte Carlin to Gov. Kathy Hochul.
Provided
A letter from 10-year-old Charlotte Carlin to Gov. Kathy Hochul.

“Biomarker testing saves lives,” her letter reads. “Biomarkers are puzzle pieces that tell patients who need it important information about their cancer.”

Charlotte benefited from biomarker testing, which involves testing blood or tissue for the presence of certain genes, or biomarkers. With that knowledge, doctors can target a patient’s treatment to better manage their illness and often provide a better outcome.

In Charlotte’s case, the testing found that she has the gene BRAF V600E. If some small pieces of the original tumor that remain in her brain were to reactivate, the test results make her eligible for the drug dabrafenib, which targets her exact type of tumor and inhibits it from growing.

Biomarker testing also helped her mother. She’s a cancer survivor, too.

In Mary Carlin’s case, testing done in 2015 identified a tumor in her breast as one fueled by estrogen. As a result, she’s able to take a pill, anastrozole, that inhibits estrogen production throughout her body to help prevent the cancer from returning. She also chose a double mastectomy as part of her treatment.

Mary Carlin later found — again through biomarker testing — that she has the BRCA2 gene, and that she’s more susceptible to ovarian cancer. One of her great-aunts died of that illness before the age of 50. The information from the two tests convinced her to have her ovaries removed as well.

“I knew I had a high risk of ovarian cancer, but also the information that estrogen was driving those tumors, it made the most sense to me to try to eliminate the estrogen as much as possible,” Mary Carlin said.

Carlin said she and Charlotte are fortunate that they had insurance plans that paid for the testing, citing the importance of such coverage at a time when there’ve been many medical advances for targeted cancer drugs.

But others don’t have that option.

“Medical innovation is outpacing what insurance companies will cover,” she said. “So, something may be readily available for a patient, a cancer patient, but they may not financially be able to access it. And I think that's awful.”

Mary and Charlotte have been to the state Capitol several times this year to advocate for the bill that would require private health insurance and Medicaid to pay for biomarker testing. The Carlins met with lawmakers and their staffs and spoke at news conferences. The measure passed both houses, unanimously in the state Senate.

Charlotte has one last person to convince – the governor.

“I hope you will sign (the bill) into law,” her letter to Hochul reads in part. “Thank you very much for reading this. Sincerely, Charlotte.”

Hochul usually does not like to say in advance whether she will sign a piece of legislation. Her office will only say that the bill has not yet reached her desk.

Karen DeWitt is Capitol Bureau chief for the New York Public News Network, composed of a dozen newsrooms across the state. She has covered state government and politics for the network since 1990.