My PAH Comprehensive Care Center Is Too Far Away

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PAH Comprehensive Care Centers are a great place to get care for pulmonary arterial hypertension for several reasons. They have providers specially trained in PAH and other advanced lung diseases, they offer research studies to advance the understanding and treatment options for pulmonary arterial hypertension and they have dedicated nurses to help support their goal of exceptional care for patients with this rare disease.

The down side to CCCs (Comprehensive Care Centers) is that they aren’t on every corner.  Often times there is only one center in a state and some states within the US don’t have any CCCs. At some point the expense and burden of driving or flying several hours for each appointment may become overwhelming. Below are a few options for dealing with this scenario.

Regional Clinical Programs

The Pulmonary Hypertension Association has recently accredited the first Regional Clinical Programs (RCPs). The RCPs are focused on extending highly focused quality care for pulmonary arterial hypertension patients. Regional Clinical Programs have highly trained physicians and staff but may not offer research studies at their sites and are not affiliated with lung transplant programs. Each RCP works closely with a Comprehensive Care Center.

French Hospital Medical Center’s Central Coast Pulmonary Hypertension Center in San Luis Obispo, CA; Sentara Norfolk General Hospital’s Pulmonary Hypertension Clinic in Norfolk, VA.; and University of Connecticut Health’s Pulmonary Vascular Disease Program in Farmington, CT are the first three RCPs to receive accreditation by the PHA. Although there are currently only 3 RCPs in the United States, the PHA is currently in process of reviewing applications and providing accreditation for several more. PAH patients that live near a RCP should be able to work with their current specialist to transition their routine visits to a RCP.

Local Pulmonologists or Cardiologists With An Interest In PAH

Another option is for a PAH patient to work with their current specialist to locate a local Pulmonologist or Cardiologist that might have experience with or a special interest in PAH. This may be a provider that refers patients to the CCC regularly or a well-respected colleague that your current specialist will be able to work with very closely. Many times the local physician can see the PAH patient quickly and communicate with the PAH specialist with any urgent concerns. Usually the PAH specialist will still need to see the patient but those visits may be spread out to every quarter, every six months or every year depending on stability of the patient’s condition.

Obtaining an accurate diagnosis and having appropriate effective pulmonary hypertension treatments is essential to having good outcomes and a CCC or RCP is still the best place to get started. But if commuting to a PAH center is a difficulty make sure to work with the center to help identify the safest way to move forward with finding healthcare closer to home.

Click here for the 2017 list of Comprehensive Care Centers that treat Pulmonary Hypertension.