Throwback: PHA Roving Reporter Takes on 2012 Conference

Food. Fun. Friends. That sums up the exciting Patient and Family Meet-and-Greet from our 2012 Conference. PHA Roving Reporter, Nicole Northrop, took to our 2012 Conference Blog to describe the scene filled with tons to do and see!

Walking into the Crystal Ballroom at the Renaissance Orlando at SeaWorld®, one would see many booths, delicious food, eager people, and fun activities. These aspects are what made the Patient and Family Meet-and-Greet at PHA’s 10th International Conference so enjoyable. The many people crowded into the ballroom were sporting a paper carnation. Each carnation was a different color to represent the many regions in which these people live. Every person, patient, caregiver and medical professional alike, seemed to be enjoying Conference. The ballroom was filled with happy chattering with people they had met.

Read Nicole's full blog post from our 2012 Conference

PHCC: Raising the Quality of Care for All PH Patients

At PHA’s 2014 International PH Conference and Scientific Sessions in Indianapolis this June, patients, caregivers and medical professionals will have opportunities to learn and share additional information about the PHCC initiative. 

 

PHA is pleased to announce a new chapter in the diagnosis and management of pulmonary hypertension: the PHA-Accredited Pulmonary Hypertension Care Centers (PHCC) initiative. Since 2011, the PHA Scientific Leadership Council (SLC) and a subcommittee, led by Dr. Murali Chakinala and including more than 40 physicians, non-physician clinicians, patients and caregivers, have sought to develop a program to identify medical centers with special expertise in treating PH. The primary goal of this program is to raise the overall quality of care and outcomes in patients with this life-threatening disease. 

At PHA, we frequently receive inquiries from cardiologists and pulmonologists who are interested in treating PH but are unsure how to organize a robust PH program correctly and efficiently. We now have a resource to provide them! In the near future, medical centers treating pulmonary hypertension will be invited to apply to become a PHA-Accredited PH Care Center. Successful applicants will be placed into one of two levels of accreditation based on the depth of all resources available to the PH program. These levels will be defined as: 

• PHA-Accredited Center of Comprehensive Care (CCC): a highly organized, full-time PH center that proficiently evaluates PH patients based on published evidence-based guidelines and provides expert treatment of patients with all of the FDA-approved therapies. CCCs also make important contributions to PH research and education
• PHA-Accredited Regional Clinical Program (RCP): a regional PH Center that proficiently evaluates PH patients and provides expert treatment with all non-infused therapies. An RCP must collaborate with its regional CCCs by referring patients who may benefit from opportunities unavailable at the RCP, including the initiation of infused therapies and participation in clinical trials.

What Does the PHCC Initiative Mean to Me?

PHCC is meant to be another tool in your fight against PH. When fully implemented, PHCC will be a network of expert clinicians who you can either see directly or who your medical team can contact when optimizing your care. This includes a cohesive medical team, verification that diagnoses are made correctly and appropriate treatment started, as well as explicit institutional support for the pulmonary hypertension program.

View the full criteria list for Centers of Comprehensive Care and Regional Clinical Programs. Applications are expected to open and full site visits to begin in the second half of 2014, and we anticipate that it will be several years before all qualified and interested sites have an opportunity to be processed for accreditation.

Where Can I Go for More Information? 

• Online: The PHCC website is regularly updated with more information on the initiative and what it means for you.
• An upcoming webinar: Drs. Michael McGoon, Erika Berman-Rosenzweig and Murali Chakinala will lead a webinar on April 30, 2014, to discuss the PHCC initiative. There will be time for Q&A at the end. Register for this webinar now. If you are unable to join, a recording of the webinar will be placed in PHA Classroom. 
• PHA's 2014 International PH Conference: During Conference in Indianapolis this June, we will have even more opportunities to share additional information about the PHCC. Register for Conference now.

Written by:
Michael Gray, Director of Medical Services, PHA

Olivia Onyeador, PHCC Program Manager, PHA

Posted by:
Kristie Link, Publications Intern, PHA

Throwback: Newly-Diagnosed Patient Attends 2008 Conference

Almost six years ago, we interviewed a newly diagnosed PH patient at our 2008 International PH Conference. In our video interview, this patient shares her experience of how she found PHA, the support she received to attend Conference and some highlights from her time in Houston.

“I was really confused about my illness, and would really love to know about it and meet other people who have the same illness. I met a lot of them on the internet but wanted to meet them face- to face… I met some really GREAT people.”

A PH Patient and PHA Community Member: Carol Bowling

Carol Bowling says her favorite thing about PHA’s International PH Conference and Scientific Sessions is meeting so many wonderful people. To her, there is nothing better than walking into the lobby of the hotel and seeing 10 people who have oxygen, or pumps, and knowing that they are her peers. Carol, a PH patient from California, says that seeing others with the same equipment means nobody is going to stare at you because you’re pulling an oxygen tank or have to change a pump.

Carol attended her first Conference in 2012, and her experience there has really propelled her involvement with PHA. “It’s amazing to be among people who absolutely get it,” says Carol. “The best part, for example, is at lunch when you start the conversation about, ‘What drugs are you on?’ or ‘Tell me about your experience with PH’ and within 15 minutes, it changes to ‘Do you have a family?’ You realize that we are not our disease, we are just people.”

Participating in the Research Room is another Conference highlight for Carol for two reasons. First, she personally feels like she is doing something to help move forward PH research. Second, she can tell the researchers are thrilled to meet so many PH patients in such a brief space of time. “They are so excited to share the research that they’re doing with you and how they are trying to help find a cure for this disease,” says Carol. Information about how you can get involved in the Research Room at our 2014 Conference will be available on our Conference website in the coming weeks.

At the 2014 Conference this June, Carol will be chair of a Patient/Family Led Session on traveling with PH. Outside of Conference, Carol is involved with the PHA PHriends program and serves as a mentor on the Patient-to-Patient Support Line, which connects patients, family members, friends, and even medical professionals with trained mentors who can answer questions and provide information and support. To meet Carol and many other PH patients this June, be sure to register for Conference today.

Posted by:

Kimberly Smith
Patient & Caregiver Services Intern, PHA