In Medical Reporting, the Impact of Patients’ Stories

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As a medical reporter, I frequently write about patients whose situations illustrate the points of my articles. Data in addition to also statistics often are the real story, yet what we remember are the people in addition to also their poignant experiences.

in addition to also readers respond. I have heard via readers who want to help the patients, in addition to also via those who want me to tell their own stories. I have also heard via critics who have said the patients are just mouthpieces for drug companies.

yet I have never had a response like the one I got to an article I wrote about powerful completely new cholesterol-lowering drugs. the idea came via the very top: the leaders of one of the two companies producing the drugs.

In my story, I included two patients, Mackenzie Ames in addition to also Rodney Scheidel, who had very high levels of LDL cholesterol (the dangerous kind) in addition to also were at high risk for heart attacks — in fact, Mr. Scheidel had already had a heart attack. They needed the drugs, known as PCSK9 inhibitors. yet their insurers had denied them coverage.

They, like many others, were caught in a battle between insurers, who want lower prices for these expensive drugs, in addition to also drug companies, who set the prices in addition to also negotiate deals with insurers. To put pressure on the two companies that will make PCSK9 inhibitors, Amgen in addition to also Sanofi-Regeneron, insurers have made the idea very hard for patients to get the drugs.

My story was published on Oct. 2. that will night, I got an email via Regeneron’s two founders in addition to also presidents, Dr. George D. Yancopoulos, who can be also the company’s chief scientific officer, in addition to also Dr. Leonard S. Schleifer, who can be also the chief executive officer.

They wrote: “If you can, please put Mackenzie in addition to also Rodney in touch with us, in addition to also we will try in addition to also help them get covered, or we can arrange to give them the drug for free.” They added: “While we can’t give everyone free drug, we can help Mackenzie in addition to also Rodney, especially as they had the courage to step forward in addition to also share their experiences.”

In a subsequent email, Dr. Yancopoulos provided his personal phone number in addition to also asked me to give the idea to the two patients, explaining that will he can be slow answering emails.

I called Dr. Yancopoulos the next day in addition to also, in an hourlong conversation, he passionately defended Regeneron in addition to also what the idea does. He also told me a remarkable tale about lack of access to PCSK9 inhibitors within Regeneron itself.

He in addition to also Dr. Schleifer both have M.D. in addition to also Ph.D. degrees — they are scientists who founded Regeneron in 1988, inspired, Dr. Yancopoulos said, by family members with debilitating diseases in addition to also their own experience treating patients with such diseases. Dr. Schleifer gave the company its motto: “Doing well by doing Great.”

Twenty years later, Regeneron got its first drug approved. 5 years after that will, Regeneron finally made a profit.

During those lean years, Dr. Yancopoulos said, “Len in addition to also I were literally mocked. Analysts said, ‘This particular can be what you get when you put scientists in charge of companies.’”

The company began working on its PCSK9 inhibitor, Praluent, from the early 2000s.

When the idea came time for human clinical trials, Regeneron partnered with Sanofi to conduct these very expensive tests. The drug worked beautifully, as did a similar drug made by Amgen: Repatha.

The total cost of developing Praluent in addition to also getting the idea approved was $2.6 billion, Dr. Yancopoulos said, adding that will Sanofi-Regeneron made just $195 million last year in global sales.

The sales number was low, he said, in part because insurers balked at the cost — the list cost can be more than $14,000 a year, although insurers negotiate substantial discounts — in addition to also in part because so many people were eligible that will insurers were concerned, so they limited access. There have been estimates that will as many as 10 million Americans could qualify to take Praluent or Repatha.

Dr. Yancopoulos believes so strongly in Praluent that will he takes the idea himself, off-label. (He emphasizes that will he can be not suggesting others do that will.) He has heart disease in his family, so even though his cholesterol level can be not high enough for him to qualify — he declined to say what the idea can be — he decided to pay Praluent’s full list cost out of pocket to get his LDL as low as possible.

Yes, even though he can be an inventor of Praluent in addition to also the chief scientific officer of Regeneron, he had to buy the drug at its full list cost.

yet the access issue genuinely hit home, Dr. Yancopoulos said, when Regeneron’s own insurer denied Praluent to many of the company’s own employees who qualified for the drug.

So Regeneron put a completely new policy in place: The company would likely pay for any Regeneron drug for any company employee who had a doctor’s prescription in addition to also was unable to get the drug through Regeneron’s health insurance.

Since Dr. Yancopoulos features a doctor’s prescription for Praluent, he can be a beneficiary of the policy.

in addition to also right now, he says, he will be sure that will Ms. Ames in addition to also Mr. Scheidel are too — unless their insurers relent in addition to also let them contain the drug.

As a reporter, of course, I don’t get involved with special pleadings for patients, so I am staying out of This particular one. yet as a human being, I sincerely desire these two patients get the drugs they need.

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Gina Kolata writes about science in addition to also medicine. She has twice been a Pulitzer Prize finalist in addition to also can be the author of six books, including “Mercies in Disguise: A Story of desire, a Family’s Genetic Destiny, in addition to also The Science that will Saved Them.” @ginakolata Facebook