A large majority of the comments/questions we receive from our readers are requests for recommendations for a PAH expert close to home. This is a very important question that is very difficult to answer. Pulmonary arterial hypertension is a rare disease, community physicians may not know of any PH specialists in their area. Currently there is not a certification for Pulmonary Hypertension Centers of Excellence. Without an official certification process anyone can claim that they are PH specialists.
The PHA (Pulmonary Hypertension Association) has a list of physicians that have registered as PH providers at www.phassociation.org/Patients/FindADoctor. These physicians answer a few basic questions such as how many pulmonary hypertension patients do they treat and how many patients do they have on each therapy. This information is only updated at the discretion of the physician and the profiles can become out of date very quickly. At the present time there isn’t a threshold to be listed, a physician may have one PH patient or one thousand PH patients and they will both appear on the list in the same way.
Pulmonary hypertension is a progressive disease that can be fatal without treatment. There are now several therapies to treat PH so it is very important to get to a PH specialist as quickly as possible upon symptom onset. For this reason the PHA has announced a new program to accredit PH Care Centers. They are currently putting together a team of healthcare professionals experienced in caring for PH patients to review applications from centers wanting to be accredited and to conduct on site visits to the centers. The application process is expected to open in early 2014. The PHA expects the process of accrediting current PH Care Centers to take three to four years.
If you are currently looking for a PH specialist the current PHA list of physicians is a great place to start. Google the physicians you are interested in seeing or look up their practice’s website. If you can’t find information about them on the web call their office and ask a few basic questions. PH specialists should be cardiologist or pulmonologist with specific training in PAH. The physician should have experience with oral, inhaled, and continuously infused therapies. The practice should have PH coordinators dedicated to caring for PH patients. PH support groups and research trials should be available. The PHA will start adding the PH Care Centers that have been accredited as they move forward. Check back for more information on this topic as it becomes available.