The Pulmonary Hypertension Association (PHA) recently assembled 26 pulmonary hypertension (PH) specialists to launch “PH Care for All,” an initiative to examine and address treatment discrepancies for minorities and low-income patients living with PH.
PH is an increase of blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, together known as the lung vasculature, leading to shortness of breath, dizziness, fainting, leg swelling, and other symptoms. The condition continues to be an increasing concern for researchers and health practitioners alike, given the high mortality rate and serious side effects associated with the disease. Currently there is no cure for PH, however, the symptoms can be controlled and disease progression can be slowed.
An analysis of the Registry to Evaluate Early and Long-term Pulmonary Arterial Hypertension (REVEAL), conducted in 2011, found that most PH patients experienced diagnostic delays leading to a mean time to disease diagnosis of 2.8 years.
Recently, results from a study conducted by a team of researchers led by Dr. Arunabh Talwar, from Northshore, Long Island Jewish Medical Center, showed that patients who are socioeconomically disadvantaged and from ethnic minorities experience disparities in accessing PH diagnoses, and also experience other barriers when in comes to appropriate management of their disease.
“These barriers not only adversely affect the PH diagnosis itself, but also impact patients’ ability to receive treatment once the diagnosis has been made,” Stanford University’s Dr. Vinicio de Jesus Perez, who co-chairs the “PH Care for All” medical committee, said in a press release. “The concern is that many of these patients are missing the window for treatment and intervention entirely.”
The National Center for Health Statistics conducted a database review from 1994-1998 for death due to PAH by age, gender, and race across nine regions. The study revealed that African-American women with PAH had the highest mortality rates across all ages.
Figures from the 2010 U.S. Census show that 36 percent of the U.S. population is from a racial or ethnic minority community, and these figures are expected to increase over the next 10 years. But, compared to the rest of the U.S. population, minorities have been found to have a reduced quality of life due to health-related issues.
The basis of these disparities seems to be associated with limited education, socioeconomic status, higher environmental and genetic risks, more barriers to healthcare access, and low adherence to prevention and treatment guidelines.
“With fourteen treatments — which is as many or more treatments that exist for all but two of roughly 7,000 rare diseases — PH patient care is growing rapidly,” said PHA President and CEO Rino Aldrighetti. “As PHA’s advocacy, education, awareness, Pulmonary Hypertension Care Center accreditation program, and the PHA Registry continue to improve PH diagnosis and care, we must ensure that the additional needs of under-represented minorities and socioeconomically disadvantaged patients are met.”
Talwar and Perez serve as chairs of the PHA initiative “PH Care for All,” which aims to balance the field for these populations. This will be achieved with the help of 26 researchers and PH specialist clinicians, who will work to identify and address the barriers to the diagnosis and treatment of PH in minority and low-income patients.
The work will be used to raise awareness about the needs of disadvantaged communities, and to push legislative and institutional change to remove barriers and improve access to care for the people who need them.
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