My Journey with CTEPH

2018-11-14T16:59:27+00:00 November 14th, 2018|

“Throughout my journey I have found that there is not enough awareness about PH and CTEPH. So, I have made it a personal mission to help raise awareness so that through early detection and intervention, lives can be saved.” – Angela Michelle By: Angela Michelle “My name is Angela Michelle and I’m from

Early diagnosis is vital for proper treatment of life-threatening pulmonary disease

2018-11-14T17:06:48+00:00 November 14th, 2018|

Pulmonary Hypertension Association establishes November 14 as CTEPH Awareness Day Silver Spring, MD (November 14, 2018) – In order to help raise awareness and improve diagnosis of a rare form of pulmonary hypertension (PH), the Pulmonary Hypertension Association has established November 14 as Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Awareness Day. Symptoms—including shortness of breath, fatigue

CEO Update: Join PHA in Raising Awareness of PH in November

2018-11-02T20:34:58+00:00 November 2nd, 2018|

In fulfilling our mission at the Pulmonary Hypertension Association (PHA) to extend and improve the lives of those affected by pulmonary hypertension (PH), awareness is key. Although most of us did not know much, if anything, about PH until we were affected personally as a patient, family member or friend, we know now that

Hear Ye! Hear Ye! Get Your Proclamation During Pulmonary Hypertension Awareness Month

2018-10-12T21:31:35+00:00 October 12th, 2018|

Proclamations – statements encouraging people to take note of a particular person, place or time of year – are a popular way for elected officials to recognize issues that are important to their constituents. Proclamations can be issued by officials at any level of government, including city council members, governors and members of Congress.

Take Action Now and on November 8 with PHA’s Advocacy Action Center

2018-09-28T16:33:22+00:00 September 28th, 2018|

Recently, Kerry Babylon, an adult with pulmonary hypertension (PH) and Silver Spring, Md., PHA support group leader, visited the Rockville, Md., district office of U.S. Rep. Jamie Raskin (D-Md.). During the meeting, Kerry asked that he co-sponsor H.R. 3976, a bill supported by the Pulmonary Hypertension Association (PHA) to protect access to charitable assistance.

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

2018-11-05T13:47:03+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