Thanks to Christine Dickler, PHA's Associate Director of International Services, for this guest blog...
During the holiday season, it’s more apparent than ever how lucky we are to have so many friends and partners in this vibrant community. With hundreds of support groups, dozens of online community groups, and local events to draw us together, we can take stock of the incredible people we meet thanks to this otherwise difficult disease. And new connections are being made every day, in places much further than we might ever have imagined…
PHA’s International Services department is an active hub for patients, doctors, and associations outside the US. The connections PHA makes with the global PH community enhance and inspire our work every day. This fall, we were contacted by a young woman in Algeria who was in search of medication for her mother. Kahina explained that though the drug was approved in her country, her mother frequently did not receive the deliveries in time – an obstacle that left her without treatment for days, weeks, even three months, while the life-saving drug was locked up in customs. Every few months for more than two years, Kahina travelled to the capital to demand that the government approve funding to pay for the next supply, that the hospital place the order well before it was needed, and that customs release the treatment promptly.
As we learned more about her mother’s immediate needs – medicine that would dramatically improve her pressures and keep her well – Kahina’s story revealed a much greater need: advocacy for every patient in Algeria and medical education to ensure adequate treatment. From what Kahina knows, there are only three or four PH patients identified in all of Algeria, and these patients, too, must endure periods without proper therapy.
In the story of Kahina’s mother, there are many heroes. There is the doctor in France who finally recognized her symptoms, allowing her to begin returning to her life as an active painter. This doctor continues to advise her local physician, who must perform tests she doesn’t fully understand in facilities that aren’t fully equipped for the task. There are the government officials who, not understanding the severity of PH or the importance of the expensive drugs, approve an order that costs 20 times more per month than the average monthly income. There are the pharmaceutical representatives who ensured that an ally was placed in the central pharmacy so that medicine would be ordered correctly, and in advance.
And of course, there is the story of a daughter who made friends across the globe in order to keep her mother safe – even if it means taking on new battles! With one of her mother’s ten drugs made more accessible, Kahina says that she’s start fighting to get another approved for reimbursement, saying “…another issue to be solved , I’ll try to do my best again!”
