Getting a second opinion for your CF care
Updated: Nov 3, 2020
By Amy Gutierrez
One of the great benefits of working in biotech was seeing firsthand how differently physicians can treat the same disease. Most Americans assume that with any given medical condition one can visit a doctor of the appropriate specialty and get more or less the same care as another doctor across the city or across the country. Clinical care guidelines, training, and standards of care makes sure of that, right? Nope.
This couldn’t be further from the truth and it’s definitely not the case in cystic fibrosis care, whether in the US or across the world. There are dramatically different outcomes (read: age of death, median FEV1, etc.) at various CF centers both domestically and internationally. Sure, this could be because of socioeconomic variations, insurance access, patient education, and other reasons – but if you’ve actively sought out second opinions from CF centers across the US, you know the skill and knowledge of the CF physician simply varies. Ultimately, that influences the health outcomes of the CF patients they treat.
If you haven’t read Atul Gawande’s The Bell Curve article in The New Yorker, I would highly recommend leaving this blog right now and reading it. I read it once a year to remind myself of how important it is to keep up on CF research (thank goodness adults with CF finally have access to ALL of NACFC virtually this year so we don’t have to risk cross-infection by attending in person) and to get second opinions regularly for my CF care.
Dr. Gawande’s article poignantly states, “[i]t used to be assumed that differences among hospitals or doctors in a particular specialty were generally insignificant. If you plotted a graph showing the results of all the centers treating cystic fibrosis—or any other disease, for that matter—people expected that the curve would look something like a shark fin, with most places clustered around the very best outcomes. But the evidence has begun to indicate otherwise. What you tend to find is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle.” This is the case in CF care. I don’t know about you, but I work too darn hard on my health not to have great healthcare providers beside me.
As you’ll see in The New Yorker article, Dr. Warwick took a dramatically different approach in CF care in Minnesota and his patients were living longer than almost any other CF center in the US. The CF Foundation was innovative enough decades ago to form a registry, which aggregates all sorts of data, including: FEV1, BMI, and age of death, in addition to other information such as cultured bacteria, CFRD diagnosis, and more.
Some of this data is available through the Care Center Data from the CFF and allows people with CF to get a sense of how CF centers perform across the US. Although it’s October 2020, the page says “The 2017 data were reported to the CF Foundation's Patient Registry for the period of January 1, 2017, through December 31, 2017.“ You’ll be able to see each center’s average FEV1, BMI, Screening for CF Related Diabetes, and following Guidelines for Care in CF.
Here are two separate CF centers in the US where you can see differences. Note the differences in center FEV1:
There are many factors that feed into these data points, not just the quality of care from the CF care team. But, without question, the quality of care from the CF team also impacts these outcome numbers.
Ideally, people with CF should have access to more data points about CF centers than just the four that currently exist. In general, people with CF should have much more access to patient registry data than they do—the highlight reel of the annual registry isn’t enough.
How have I gone about getting second opinions in CF care? I look for centers/physicians doing research, as these providers are often subject matter experts and have access to information years before publication. I’ve struggled with aspergillus in my life, so I took a trip to Stanford to see Dr. Richard Moss, –an expert in aspergillus and ABPA who has also done quite a bit of research in the area. I took a trip to see Dr. Warwick before he passed not only because of his knowledge and track record in CF but because of his willingness to treat patients like equals and creative problem-solving skills. Lastly, I’ve changed my permanent care to National Jewish, three states away, to Dr. Jennifer Taylor-Cousar. After an initial second opinion visit, I was convinced this was the best care for me for a multitude of reasons: her care and concern for women’s health in CF, her research interests, her incredible bedside manner, and her experience with a large number of adults with cystic fibrosis, to name a few.
In 2020, it’s never been easier to get a second opinion through telehealth. From the comfort of your own home, you can get a second, or third set of eyes from a CF center that isn’t your home center and gain insight into how you may be able to improve your health. In years prior, I’ve hopped on planes, spent money on hotels, and taken many days off from work to get a second opinion. I’m thrilled that a silver lining of COVID-19 is that people with CF cans more easily access different CF centers that can potentially improve their health.
About the Author: Amy is 38 years old and lives in Los Angeles with her husband and dachshund. Amy has been an avid reader of CF Roundtable for 20 years and currently serves as the Vice President. She can be reached at firstname.lastname@example.org.