Help improve your PH patients' access to their prescribed treatments.
The Specialty Pharmacy Feedback Form—an initiative of PHA and the Caring Voice Coalition—provides an opportunity for you and your patients to let SPs know what they're doing well and where they can improve. Input from medical professionals helps the Specialty Pharmacy Advisory Board identify trends and best practices in the specialty pharmacy field. Submit your comments at: www.PHAssociation.org/SpecialtyPharmacyForm.
Help ensure PH care for all!
Support your colleagues as they seek to identify additional barriers encountered by underrepresented minorities and socioeconomically disadvantaged patients seeking PH diagnosis and treatment. Please take our brief survey, as the committee seeks to identify the populations most affected by these barriers, as well as the barriers themselves. https://www.surveymonkey.com/r/PHCareforAll
About PH Care for All:
Progress in treatment of pulmonary hypertension (PH) and the organization of the PH community has been substantial over the past 25 years. The PH field has progressed from zero treatments to 14, which is as many or more than all but 2 of the roughly 7,000 rare diseases. Medical research and knowledge in the field is expanding rapidly.
Early data collected through PHA's Envelope of Hope program is beginning to show that PHA's Early Diagnosis Campaign is making headway in terms of the average time from onset of symptoms to point of diagnosis; however, research findings presented at the 2014 meeting of the American Thoracic Society by Cardenas-Garcia et al indicate that underrepresented minorities and socioeconomically disadvantaged patients are impacted disproportionately by the most common barriers to PH diagnosis, as well as by a number of additional barriers unique to these populations. These barriers not only adversely affect the PH diagnosis itself, but also impact patients' ability to receive treatment once the diagnosis has been made. With preliminary data indicating that these patients experience diagnostic delays beyond the mean of 2.8 years indicated by REVEAL, the concern is that many of these patients are missing the window for treatment and intervention entirely. As PHA continues to positively impact the average time to PH diagnosis, we must ensure that the additional needs of ethnic minorities and socioeconomically disadvantaged patients are met.
From this desire, PH Care for All was born. The committee, consisting of 23 expert clinicians and academicians committed to reaching these vulnerable patients, is led by Vinicio de Jesus Perez, MD, and Arunabh Talwar, MD. With this initiative, the PHA continues its commitment to advocating for PH patients by educating health care providers and building a foundation for new health policies that will favor this vulnerable patient population. Our ultimate goal is to ensure that all PH patients receive the same level of care regardless of ethnicity, socioeconomic status, or race. In short, we'd like to ensure PH care for all!
Start a support group at your practice!
Hundreds of PH-treating physicians and allied health care professionals play a vital role in the success of PH support groups. Support group participation helps with patient compliance, as patients learn about the disease, gain coping skills, and find the emotional strength to keep fighting.
According to our latest census, which surveyed 160 leaders, half of our support groups meet in hospitals or clinics. Nearly 60% of meetings have speakers, 82% of which have a medical background. As a medical professional, you have the resources groups are looking for: a meeting space and expertise. Let PHA do the rest, providing food sponsorship and publicity. Start a support group at your hospital or clinic by contacting MichaelK@PHAssociation.org today.
