Wednesday, June 11, 2014

The International Reach of the PH Cause

The fight against PH is a global effort… and one that is growing rapidly. The goal is for no one to be left behind in the march toward better treatments, treatment accessibility and, ultimately, a cure. In recent blogs, I wrote about PHA's participation at the Saudi PH Association (SAPH) conference in Oman and our visit to ISEEK, the patient association in China. As an update, we've heard that several cities in China, following the Beijing meeting we participated in, have approved treatments for PH. We are also moving forward on our agreement with Saudi Arabian PH physicians to help them build patient participation into their next East Mediterranean Region Conference. It's nice to see that SAPH has included various PHA resources prominently on their homepage. As we prepare for our 2014 International Conference next week in Indianapolis, we are looking forward to seeing our friends from throughout the U.S. and also our friends from more than 30 nations around the world.

With this blog, PHA Medical Services staffer, Briana Rivas-Morello, concludes the story of PHA's World PH Day (and week!) travels. Here are her observations.

Briana presents to conference attendees.
On April 29, 2014, the Sociedad Latina de Hipertensión Pulmonar (HP) hosted an educational program, Día Mundial de la Hipertensión Pulmonar 2014, in Medellín, Colombia. I was excited for the opportunity to represent PHA at this meeting. The Sociedad Latina de HP, an umbrella organization that brings together the Latin American PH organizations, hosted this meeting for World PH Day (May 5), which provides the opportunity for PH associations around the world to act as one collaborative force against PH. In this way, across the globe, we took one step forward in worldwide PH awareness.

Sociedad Latina de HP consists of representation by 16 Spanish-speaking organizations in Latin America and Europe. The Día Mundial de la Hipertensión Pulmonar event brought together patients, family members and medical professionals to network, learn from each other and, most importantly, become more empowered to fight the disease. It was fascinating to watch presentations ranging from basic PH diagnosis and management, to the complex psychosocial issues that patients may face and the best coping strategies for living with PH. In presentation after presentation, I watched patients and caregivers engage and truly empower themselves in their fight against the disease.

PHA in particular was invited to present on how to organize patient support groups and maximize community involvement. In the past decades, the PH community has grown tremendously, and this is no exception in the Latin American community. As these groups continue to increase in numbers and capacity, they are facing new challenges. Most groups, as PHA did a few decades ago, originated as patient support groups, organized by and for patients. As they grow, Latin American groups are now beginning to grapple with such questions as:
  • In what ways can medical professionals become more involved?
  • In what ways might government or health ministry officials become more involved?
  • What can family members and friends do to help?
These questions were the ones I tried to answer throughout my presentation, by providing examples of how PHA has been able to involve medical professionals, political representatives and family members and friends into our mission. The most important message that I hoped attendees would take home was that there is no loss in asking. It seems as though there is a slight hesitation to ask medical professionals or health officials to become more involved, as they already give so much of their time to the community. But as I asked the attendees to look around, and see how many medical professionals (many of whom work closely with PHA!), family members and friends were in the room, it was clear that there are countless individuals willing to help patient groups; they just need to be provided with the opportunity to do so.

Migdalia Denis, the president of Sociedad Latina de HP,
presents Dr. Sandoval with his award.
In this way, Sociedad Latina de HP organizations are working together to answer the above questions and begin to build toward their mission to offer hope, support and education to patients with PH and to advocate on their behalf. At PHA, we feel honored to be included in this process.

While in Colombia, I was especially excited to see Dr. Julio Sandoval receive the first Sociedad Latina de HP medical excellence award. Dr. Sandoval, of the Instituto Nacional de Cardiología in Mexico, is a longtime partner of PHA, and it was an absolute privilege to see him win the award. As I watched him receive the plaque, I couldn't help but reflect that it was an absolute and tangible representation of what World PH Day is - unity and collaboration in the fight against PH. We are all working together, in all ways that we can, involving as many players as we can.

PHA is extremely excited to continue to partner with the Sociedad Latina de HP to provide support and education to all those living with PH. This partnership is particularly important as PHA continues to develop its Spanish educational content. At the end of 2013, PHA hosted its first Spanish webinar on, and the second Spanish webinar just about one month ago. I was able to share this event with attendees at the meeting and receive feedback on our Spanish programming which will better help us reach more patients' needs.

Briana (left) and Yanira Polonia, a support group leader for the
Dominican Republic group, visit a famous statue while
traveling in Colombia for the conference.
To add to my excitement, I recently learned that more than half of the participants coming to the International Leaders' Summit at PHA's 2014 International PH Conference and Scientific Sessions will be representing countries in Latin America. I look forward to reconnecting with friends made at the Día Mundial de la Hipertensión Pulmonar and meeting many new friends! In persisting to strengthen these global partnerships critical in the fight against PH, I hope that we'll truly progress to the day we may find a cure.

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