Treating PH: Joint Symposium Discusses Options

2018-09-07T20:04:55+00:00 September 7th, 2018|

by Phyllis Hanlon, Contributing Writer Although there are 14 different Food and Drug Administration (FDA)-approved therapies for treating World Health Organization (WHO) Group 1 pulmonary hypertension (PH) (pulmonary arterial hypertension, or PAH), there remains a need for treatments that can be used across varying classifications of PH. In 2017, the Critical Care Medicine Department of

Share Your Oxygen Experiences: PHA Responds to Proposed Changes to Medicare Oxygen Coverage

2018-09-07T20:07:48+00:00 September 7th, 2018|

The Centers for Medicare and Medicaid Services (CMS) has proposed significant changes to how home oxygen (also known as supplemental oxygen) is regulated and paid for. The Pulmonary Hypertension Association (PHA) is taking action to improve the pulmonary hypertension (PH) community’s experience accessing home oxygen. If you have been prescribed home oxygen, you can help

First-Time Advocates Speak Out on Behalf of the PH Community

2018-08-31T15:53:03+00:00 August 31st, 2018|

"Please don’t be afraid to speak your mind." -Jen Miller, adult with PH and first-time legislative advocate Pulmonary Hypertension Association (PHA) advocates are taking advantage of the August congressional recess and fall election season to meet with the members of Congress in their home states to discuss pulmonary hypertension (PH). Recently, first-time advocates Mira

Caution: Accumulator Adjustment Programs at Work

2018-08-31T15:46:44+00:00 August 30th, 2018|

Accumulator adjustment programs are a cost-management strategy some pharmacy benefit managers (PBMs) are using that may place a significant financial burden on individuals with pulmonary hypertension (PH) and other complex, costly health conditions. When an insurance plan uses an accumulator adjustment program, copay discount cards and other forms of manufacturer assistance do not apply

PHA Weighs in With FDA on Patient Engagement

2018-08-24T16:22:02+00:00 August 24th, 2018|

The Food and Drug Administration (FDA) is drafting guidelines related to patient engagement in the clinical trials process and the Pulmonary Hypertension Association (PHA) is weighing in. Recently, the FDA announced that it will produce a four-part document, “Patient-Focused Drug Development: Collecting Comprehensive and Representative Input; Guidance for Industry, Food and Drug Administration Staff, and

PHA Brings Your Voice to Capitol Hill: Treatment Access and Quality Care

2018-07-27T17:43:24+00:00 July 27th, 2018|

During the past month, the Pulmonary Hypertension Association (PHA) and members of the pulmonary hypertension (PH) community have communicated with Congress in unique ways. Hundreds of attendees at PHA’s 2018 International PH Conference and Scientific Sessions signed a petition asking Congress to fund a PH program at the Centers for Disease Control and Prevention

Rare Disease Caregiving Report Paints a Portrait of PH Caregivers in the U.S.

2018-07-06T21:06:10+00:00 July 6th, 2018|

This article by Mike Knaapen, Director, Patient and Caregiver Programs and Lisa Weber, Vice President, Greenwald and Associates, first appeared in Issue 2 2018 of Pathlight magazine. Become a member of PHA to receive this quarterly publication full of patient profiles, medical information and tips for living with pulmonary hypertension. It is well known

PHA Educates Congress about PH During Capitol Hill Lunch

2018-06-08T21:12:43+00:00 June 8th, 2018|

The Pulmonary Hypertension Association (PHA) hosted a lunch briefing in Washington, DC, Wednesday, June 6, for members of Congress and their staff. Oksana A. Shlobin, MD, FCCP, a director of the Pulmonary Hypertension Program at Inova Fairfax Hospital, educated attendees about pulmonary hypertension (PH), what it is and how it is treated. PH community

PHA’s Congressional Luncheon and Call-In Day: Two Ways to Get Congress Involved in the PHight

2018-05-15T19:47:28+00:00 May 15th, 2018|

“Oh! My grandfather has hypertension!” Have you ever heard a response like this when trying to explain pulmonary hypertension (PH)? Members of Congress make laws that impact the PH community every day, but, like so many in the community, they are often unfamiliar with the challenges and seriousness of the disease. PHA’s Congressional Luncheon and

PH Support Group Raises Awareness for PH at Teaching Hospital Staff Safety and Quality Event

2018-05-03T17:47:29+00:00 May 3rd, 2018|

March 13th may have brought a nor’easter to New Hampshire, but that didn’t stop Jane Armstrong and Deb Cantlin RN, MS from promoting awareness of pulmonary hypertension at a Staff Safety and Quality event held at a large teaching hospital.  The Dartmouth-Hitchcock (NH) PH Support Group created a large and very detailed poster which