Cross-border media comparison: Insurance coverage linked to news coverage of expensive cystic fibrosis drug

michael joynerThe following guest post is by Dr. Michael Joyner, a medical researcher at the Mayo Clinic. These views are his own. You can follow him on Twitter @DrMJoyner.  


Cystic Fibrosis (CF) is a “common” rare disease affecting about 30,000 Americans and 70,000 people worldwide. There has been much good news about CF over the past 20-30 years including much longer life expectancy for most patients due to improved pre-emptive medical care and respiratory therapy. The discovery of the gene defects that cause the disease, and new drugs that target at least some forms of the disease, have also given rise to optimism. There was hope that CF would be one of the first diseases “cured” by gene therapy, but gene therapy for any disease has been harder to accomplish than initially anticipated in the 1990s. It also turns out that many different genetic mutations can cause CF. However, work continues on gene therapy; new ideas about how to deliver healthy genes — and make them stick — are being tested.

drug costs 400 wideThe advent of new drugs for CF is an interesting story. These drugs represent part of a potentially new era of drug development based on identifying specific genetic defects that cause a disease and targeting or correcting those defects. They were also developed as the result of a novel partnership between the CF Foundation and pharma. This has been termed “venture philanthropy“.

All of this good news aside, one concern about these drugs is that they are really expensive  — about $250,000 to $300,000 dollars per year. A quick scan of the web shows that the cost issue has been a hot topic of conversation in the media, but is that the case everywhere? To try to understand who cares about cost, Christen Rachul, Maeghan Toews and Timothy Caulfield compared media coverage of one of these drugs in the US and Canada. They billed the study as “an opportunity to examine how policy issues associated with rare diseases and orphan drugs are being represented in the popular press.” (Disclosure: Caulfield is an occasional HealthNewsReview.org contributor.)

Canadian coverage highlights access restrictions; US focuses on business angle

Their analysis involved 203 newspaper articles in Canada and the U.S. that mention the drug Kalydeco. The researchers evaluated and categorized each article for its general framing and discussion of Kalydeco, including issues of drug development, patient access, reimbursement, and overall tone.

Here’s what they found:

In Canadian newspaper coverage, 77.4% of articles were framed as human interest stories featuring individual patients seeking public funding for Kalydeco, yet only 7.5% mentioned any budgetary limitations in doing so. In contrast, U.S. newspaper coverage was framed as a financial/economic story in 43.1% of articles and a medical/scientific story in 27.8%.

The researchers concluded:

Newspaper coverage varied significantly between Canada, where Kalydeco is predominantly a story about increasing patient access through full government funding, and the U.S., where Kalydeco is largely a financial story about the economic impact of Kalydeco. The difference in coverage may be due to differences in public funding between the healthcare systems of these two countries.”

Here are some examples of Canadian coverage focusing primarily on patient access:

Here are some comparable US stories that focus primarily on economic/financial impact:

This analysis follows up on an earlier study of Canadian press coverage of health policy decisions by Rachul and Caulfield that concluded:

“The news media favors a patient access ethos, which may contribute to a difficult policy-making environment.”

Niche drugs for rare diseases put new pressure on health care systems

These papers highlight the tug-of-war between costs, access and efficacy of new drugs being played out in a number of venues. This tug-of-war includes who pays for the drug, human interest narratives, and efforts by pharma to sometimes hijack the patient advocacy process. In places with more universal health insurance programs the profusion of niche drugs for rare disease will likely put pressure on government funding schemes. Rachul, Toewes and Caulfield conclude by wondering:

Reportedly priced at $259,000 per patient per year [7], the resulting impact on healthcare systems can be expected to be much greater, and it will be interesting to see if media coverage starts to grapple with the policy issues involved in providing coverage for this high-cost medication.

For the time being, it seems that US news media are enamored of the business implications of Kalydeco and are treating it mainly as investor story or a cost story focusing on the drug’s sky-high price tag. My bet, however, is that we are likely to hear more about specific insurance plans denying coverage for specific drugs to specific patients, or individual patients being unable to afford a given treatment. Access to key drugs by poorer Americans will also likely be an issue.

In the end the entire issue of high drug prices reminds me of “Steins Law” — the idea that “If something cannot go on forever, it will stop.” The economist Herb Stein said that in the 1980s about the US trade and budget deficits. Those deficits certainly have lasted longer than he might have predicted, so who knows how long the ever-higher drug prices will last.


Michael Joyner as done preclinical technical consulting for GSK, Amgen, Boston Scientific, Edwards, and Nonin on issues related to physiological monitoring, cardiovascular disease and diabetes. He is on the board of Xcede, a startup focused on tissue sealants. As a clinical anesthesiologist he prescribes no drugs or products related to his consulting. You can follow him on twitter @DrMJoyner.

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Susan Molchan

May 2, 2016 at 7:50 am

When the pharma parternership with the CFF began, I recall a proposal where the Foundation might help pay for any drugs that resulted, but I don’t think this came to pass. I Have friends with 2 twenty something kids with CF, both on this drug. It helps. It costs $600,000 annually and the parents are always in fear of the father’s job because of the cost to his insurance. I’m not sure what will happen when the kid’s are off the father’s insurance. They are in college but still get hospitalized more than most 20 somethings; it’s hard to see them getting jobs and paying for these drugs on their own, of not having the choice but to go on disability. The other question is, tho more so for today,the parents knew they were carriers , after the first, I can’t help wondering about taking such a risk not only about having another child to suffer with this illness, but now burdening society with these even greater costs for life.