The Unheard Voices of Puerto Rico: A Word From the Program Manager

June 12,2018

On Saturday, June 9, I attended the San Juan pulmonary hypertension (PH) Support Group meeting in Puerto Rico. It was a moment that had been greatly anticipated for several months, as Team PHenomenal Hope has been working to help this community get back on their feet since the fall of 2017. In case you missed it, let me give you a little background.

In August of 2017, Hurricanes Harvey, Irma, and Maria destroyed parts of Texas, Florida, and Puerto Rico. Many PH patients were left in emergency situations with few options to turn to for help. Team PH created the Unmet Needs Patient Impact Fund, and with the help of our friends at PHaware, Blue Lip Foundation, Reata, and Gilead, we were able to distribute 70 microgrants of $500 to patients affected by the hurricanes for non-medical purposes, including food, lodging, and repairs.

Recovery in Puerto Rico has been difficult. Today, roughly 9 percent of the country is still without power. Hurricane season is already upon the island, and many worry the energy infrastructure cannot withstand another storm. Team PH wanted to make sure patients in the area would be able to contact their doctors, pharmacies, and emergency services in the event of another power outage, so we created the Solar Charger Project.

With the help of our friends at Gilead, CVS Specialty, and Accredo, we were able to purchase, pack, and ship 400 solar chargers and 400 power banks for PH patients in Puerto Rico. They began arriving on the island the week of June 4, and, coincidentally, I was there attending the San Juan PH Support Group meeting on June 9. Meeting the people Team PH was assisting and hearing about their experiences through the hurricanes was both humbling and moving.

We believe these stories of survival and resilience have been lost in our busy news cycle. These voices have gone unheard, and we want to bring to light the real-life devastation our brothers and sisters of PH in Puerto Rico experienced. I will also be sharing a detailed recount of my time spend in San Juan, and what I learned and observed while I was there.

To give these stories a platform, we have created a series,“The Unheard Voices of Puerto Rico,” that we will be sharing in the “PH Stories” section of our website. We encourage you to follow the series, educate yourself on the very real situation in Puerto Rico, and learn how you can help, too.