Push to make new genomic testing more available, affordable to improve cancer care

Endometrial (Uterine) cancer awareness: Photomicrograph of uterine biopsy showing Endometrial cancer or Endometrial carcinoma.(Getty Images/iStockphoto/Md Saiful Islam Khan)
Personalized treatment is revolutionizing cancer care, with new targeted therapies tailored for a patient’s particular cancer mutation. The key that unlocks the knowledge about that cancer is genomic sequencing, which is also called Next Generation Sequencing.

“Thirty years ago, we received a breast cancer diagnosis or a lung cancer diagnosis — and it was just that,” said Dana Dornsife, founder of the nonprofit Lazarex Cancer Foundation, which aims to improve cancer outcomes by helping advanced stage patients and the medically underserved with costs associated for FDA clinical trial participation.

“We’ve been able to develop very sophisticated tests that now take us out of that generic ‘lung cancer,’ and bring us to the specific type of lung cancer,” Dornsife said.

Depending upon a person’s specific cancer, there are a growing number of targeted therapy pills and other treatments, which narrowly zoom in on the mutation, with generally manageable side effects.

“Rather than using a very broad spectrum chemotherapy agent, that not only impacts the cancerous cells but impacts a lot of your healthy cells and tissues, now we can become much more targeted with therapies, if we understand the type of mutation that someone actually has,” said Dornsife.

Specifying a target has long been part of medicine, in general, Dornsife said.

“For instance, if you had an infection, rather than giving a broad spectrum antibiotic that treats many, many, many things, if you know specifically what kind of bacteria or infection you have, then we can give you an antibiotic that very specifically treats that infection,” she said. “It’s exactly the same with cancer.”

Effective, but often prohibitively expensive

While the game-changing advances in cancer care drastically improves outcomes, it isn’t available or affordable to everyone, Dornsife said.

The Lazarex Cancer Foundation is hosting a program called “Disrupting the System” Tuesday on Capitol Hill. It’ll include oncology experts and patient advocates, who are working to make cancer research available to all.

Next Generation Sequencing can save precious time in identifying a particular mutation, said Dornsife.

Using a single biopsy, “we can run multiple tests at the very same time to identify genetic or genomic mutations,” said Dornsife, which is more efficient than earlier genetic tests that looked for a specific mutation.

She added that NGS isn’t currently available for all patients.

“A lot of it has to do with the type of insurance that you have,” Dornsife said.

For instance, if she were a Medicare patient diagnosed with breast cancer, her doctor could request a test to see if she has BRCA 1 or BRCA 2, so they can learn more about her cancer.

“But Medicare doesn’t cover the broader genomic, or multi-mutational type of tests,” Dornsife said.

While larger cancer centers, including those in the D.C. region, use NGS regularly to tailor a patient’s care, that’s not often the case in rural areas, and for uninsured patients.

“The majority of cancer patients are seen in the community setting,” said Dornsife. “And, in the community setting they don’t have the budget to just simply provide genomic testing, free of charge, so your insurance comes into play.”

Some insurance companies determine the facilities where a patient can be treated. If a patient is regulated by insurance to go to a specific clinic, and that clinic doesn’t offer genomic or genetic testing, then the patient wouldn’t receive the cutting-edge testing and treatments.

She said the goal of coming to Washington is to inform lawmakers about the benefits of Next Generation Sequencing, and look for ways to make it more available and affordable.

“Thank goodness it’s becoming much less expensive,” Dornsife said. “Even three years ago, to have genomic testing was probably $5,000 out of pocket — now I think it’s in the $1,200 to $1,500 range,” she said.

She said Tuesday’s event is trying to drive change to make genomic testing more equitable: “It is so important for a cancer patient to have access to genomic testing in order to get the best possible treatment for them.”

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Neal Augenstein

Neal Augenstein has been a reporter at WTOP since 1997. Through the years, Neal has covered many of the crimes and trials that have gripped the region. Neal's been pleased to receive awards over the years for hard news, feature reporting, use of sound and sports.

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