The truth isn’t the truth until people believe you

KEY TAKEAWAY: Only 9% of U.S. consumers believe pharma and biotechnology companies put patients over profits.   Just 28 percent of Americans have a positive view of drug makers, while 19 percent reported feeling neutral and 51 percent have a negative view.  Do pharma CEO’s even care?

The prices of several multiple sclerosis drugs have shot up in recent years. The cost of Gilenya has nearly doubled to almost $92,000 a year since Novartis got approval for it in 2010.  In a statement, Novartis pointed to its patient assistance program that eliminates monthly out-of-pocket costs for most commercially insured patients but statements like this are not enough.

Abigail Bostwick was diagnosed with multiple sclerosis in 2013. Insurance covered the first drug she took, Tecfidera, but required her to contribute $1,000 a month.  “I didn’t cry when I was handed the diagnosis of M.S.,” Bostwick said. But after learning how much prescriptions would cost, “That was when I felt truly helpless.”

Bostwick, a former journalist, has coverage through her husband’s employer because she can no longer work. They hit their $4,500 annual deductible in the very first month of every year because Gilenya, the drug she had been taking until last fall, carried a list price of about $5,500 a month. The couple put aside $375 every month to make sure they could cover that deductible.

The Bostwicks have given up family vacations, and sold a motorcycle, a car, furniture and other belongings. Changes to her husband’s employee benefits this year means another $1,000 out of pocket annually. Bostwick, who is disabled, said she plans to sign up for Medicare coverage after she loses access to her husband’s insurance.

“This is such a huge bill and it’s not really something that we can forgo,” she said. “We’re your basic middle-class couple. We don’t have an extravagant lifestyle or anything like that. But we always seem to fall through the cracks.”

Novartis’s reply “In a statement, Novartis pointed to its patient assistance program that eliminates monthly out-of-pocket costs for most commercially insured patients (Bostwick said her family income is too high to qualify for most assistance programs)”.


You would figure that someone at Novartis would read this story and reach out to do something to help this person but instead they issue a statement.    And trust in the pharma industry continues to decline.

In the United States, three manufacturers dominate the insulin market — Eli Lilly, Novo Nordisk and Sanofi — and a recent study found that prices nearly tripled from 2002 to 2013.  The drug makers have been accused of price-fixing in several patient lawsuits, and several states are investigating.

In response, the companies have rolled out programs, such as one through CVS Health, that reduce costs for the uninsured or those with high-deductible coverage.  Despite the uproar, all three manufacturers raised their list prices again in 2017, according to the Gold Standard Drug Database from Elsevier, an information analytics company.

The stories of patients who can’t afford their medications are many and to date I have not heard of one pharma company executive who has intervened to get these patients drugs they need.  On top of all this pharma’s propaganda re, PhRMA, continues to Tweet stories about new drugs that a lot of people won’t be able to afford.

It’s up to each person working in the pharma industry to fight for patients whose voices re often unheard and whose struggles to afford medications can lead to a high level of stress.   Until we understand what it’s like to choose between medications and rent, or food, we can’t help these people.  These are the people who should be speaking at EVERY pharma conference to reach decision makers with the hope that someone will finally say “enough is enough” and put patients ahead of profits.

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