Most of us get help from our primary care doctor or a local pulmonologist. They often provide helpful care, but there is no way they can know everything about the rare disease we have. Four years ago my first pulmonologist told me my I had a few months to a year to live! I got a second opinion, and my new pulmonologist referred me to a hospital that specializes in pulmonary fibrosis, the University of California, San Francisco. I am so glad I did!
If possible, try to get a referral from your local doctor to a hospital that specializes in pulmonary fibrosis. We need all the help we can get!!!
CCN or COE?
There are two designations you may come across as you search for a medical centers that have experts who treat pulmonary fibrosis.
The Pulmonary Fibrosis Foundation has assembled a network of medical centers, called the “Care Center Network,” that have specific expertise in the treatment of pulmonary fibrosis. They have 60 sites designated across the United States, with more planned. Their goal is to have a center within 2 hours of the majority of the population.
For centers to be “designated” a Care Center by the Pulmonary Fibrosis Foundation they undergo a rigorous application process and review by their medical team and advisers, patient advocates and internal PFF staff. You can visit their website to find the care centers near you. It’s worth the effort to get the best treatment possible.
“Centers of Excellence” are designated by CMS (Center of Medicare and Medicaid Services) which is administered according to state guidelines. These facilities must meet certain requirements and undergo surveys and audits of facilities and policy. It is interesting to note that patient outcomes of success are not measured or even considered in the designation.
Therefore, some feel that the term, “Center of Excellence” is misleading in that it implies or promises excellent care and high patient outcomes, which are not even measured. With few exceptions, the center of excellence designation can be applied at will by healthcare establishments, and are not restricted to those providers which meet prescribed standards and hold associated certifications.
The American Academy of Orthopedic Surgeons state that, “A hospital was deemed a “Center of Excellence” if it teamed up with CMS (then known as the Health Care Financing Administration, or HCFA) to negotiate a package price for an episode of care. That package price combined physician and hospital fees into a single payment to the hospital. The hospital then distributed shares of the payment to all the providers involved in the provision of care (including the hospital itself). This was seen as a way of “aligning the interests” of physicians and health care institutions.”
This does not mean that hospitals that are designated a “Center of Excellence” do not provide excellent care. They most likely do. Make sure you ask important questions about patient outcomes to help you understand which specialized hospital is best for you.
I found a resource online that really helps figure this out. The US News and World Report ranks the best hospitals in the United States for pulmonary care as well as other specialties. Their rankings are based largely on objective data and are updated annually. “Each specialty showcases the 50 top-scoring hospitals, based mostly on death rates for particularly challenging patients, on patient safety and on other measures of performance that can be assessed using hard data. All evaluated hospitals and their results and overall scores are displayed online, but rankings are only displayed for the top 50.”
Getting specialized care as soon as possible will help you get the best care possible. I know that some patients may not live within driving distance to a hospital that specializes in pulmonary fibrosis. I’m so sorry if this is true for you. I encourage you to get a second opinion near you if you are unhappy with your care. You can also call the Lung Help Line (1-800-LUNGUSA) by the American Lung Association. You can talk one-on-one with a medical professional who can offer tips and connect you to resources.
As I mentioned in my last column, I’ll be a guest on a webinar by monARC Bionetworks tomorrow, Wednesday August 15th from 10:00am – 11:00am pst. I’m looking forward to sharing what I’ve learned about self-care since I was diagnosed with PF four years ago.
Please join me! You can register here.
I’d love to hear from you!
Have you gotten a second opinion or been referred to a CCN or COE? What was the result? Did you get the help you needed?
Please leave a comment below and share with those who could benefit via e-mail or on social media.