The Daily Rise: Wednesday, March 2

The Wrong Question: How much is an extra month of life worth?

Rebecca Robbins writing at Stat News asks the wrong question: “How much is an extra month of life worth?”

We continue to believe that is the wrong question. Innovation isn’t a simple linear process. A treatment today that adds a few months to a patient’s life could provide the foundation for major progress in years to come.

Furthermore, different patients respond differently to different treatments. As we’ve said over and over again, the goal is to deliver the right treatment to the right patient, right now. With advances in precision medicine, we’re quickly making one-size fits all medicine a thing of the past.

“The country … needs to be able to make these types of decisions with some type of input as to costs,” Dr. Howard Forman, a Yale University economist and practicing radiologist, is quoted in the piece. “It’s all well and good to just say life is priceless, but the reality is we are paying for it.”

Everything may have a price, but innovation is priceless. Innovation gives patients hope that today’s suffering will be alleviated in the future. We can’t restructure our health care system in a way that discourages innovation, and in essence, settles for the way things are today.

Concierge Medicine Practice

Earlier this month, the New York Times John Hanc looked at a new initiative by Massachusetts General Hospital to open a concierge medicine practice.

“For $6,000 a year (and whatever their insurance pays), patients in its new Concierge Medicine Practice will get round-the-clock access to their doctors (initially, there will be three in the practice), as well as personalized nutritional, exercise and wellness counseling.”

The Boston-based hospital is the third-oldest general hospital in the nation. With an $800 million annual research budget, it’s considered one of the leading hospitals in the country and routinely receives top rankings from U.S. News & World Report’s listings as one of the country’s best hospitals.

“A concierge patient who signs up for a practice is not only looking for quality care, they are looking for unfettered access to their provider,” Dr. Michael R. Jaff, the medical director of Mass General’s Center for Specialized Services and a professor at Harvard Medical School, told the New York Times.

Concierge medicine isn’t new. From a patient’s perspective, it places a higher priority on more personalized care and greater access, but it does so by catering exclusively toward patients with higher incomes. At the same time, concierge medicine helps offset dwindling reimbursement rates and other vital health services provided to poor and working families.

Treatments for Rare Diseases

Coming off Rare Disease Day, we’re thinking positively about the growing number of patients with rare diseases that have access to highly effective treatments. Rather than dwell on yet another “drugs are too expensive” story, we see the positive side of Don Sapatkin’s recent piece for

“Most drugs have competition to help drive down prices,” Sapatkin writes. “Medicines for rare diseases often do not.”

Often neglected in our myopic media coverage of drug prices is the positive side: rare diseases have treatments that previously never existed. Sure, their might not be competition for treatments of rare diseases — but there are treatments. The diseases referenced in’s article happen between 1-3 cases per 1 million people. That’s rare — and just because it’s rare doesn’t eliminate the $1.7 billion cost to develop the drug.

“If you squeeze the balloon somewhere,” Ginny Calega, a vice president of Highmark Blue Shield, “it has to come out someplace else.”

To borrow the words of Calega, we don’t want to see a “price-only” framework squeeze the patients of rare diseases. In a price-only framework, drug companies will stop researching rare diseases — a death sentence to those patients. We need to work to contain price, but we can’t do so in a way that harms patients with rare diseases.

Voices of Value

We’re proud to announce the launch of a new Patient Rising series, Voices of Value. All year long, we hope to represent the personal stories of patients, highlight the value of medical innovation and share what it has brought to their life. The Voices of Value series will be shared on our website, podcasts, videos and quarterly within the pages of Women Magazine.

Yesterday, we kicked off the Voices of Value series with a guest blog, “Happy Birthday, Ashley.” Here’s an excerpt of our inaugural post:

“With Ashley basically staying the size of a one-year-old infant the rest of her life, I couldn’t imagine how challenging life would be, how I would be able to continue to work full time, and care for her older sister.”

“Just before Ashley’s 3rd birthday, her miracle arrived. It came in the form of a new to market and first of its kind synthetic growth hormone. The great news – the drug manufacturer in it’s effort to establish market prominence- offered the $3,000 per month injectable growth hormone at no cost for the first three months. This was the answer to the most incredible dream that filled my heart and fueled my hopes. Actually, Ashley received two miracles – access to this brand new innovative therapeutic to help her to reach her height potential, and relief from paying for the drug.”

“Then, we received a third miracle when our healthcare insurance provider was able to make the right decision to provide full cost coverage for Ashley growth hormone therapy. And, even with switching to a few different insurance providers, after 16 years on growth hormone therapy, Ashley reached her full adult height of 4 feet 6 inches at age 18.”

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