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The South Africa Cystic Fibrosis Association (SACFA) is a Non-Profit Organisation and is the primary support group and driver of advocacy for the treatment of cystic fibrosis in South Africa. Our objectives include communicating with the CF community, raising public awareness, and promoting medical advancements. Fundraising is essential to sustain these objectives.
What is Cystic Fibrosis?
Cystic Fibrosis, (CF) is an inherited genetic disease that affects a number of organs in the body, primarily the lungs and pancreas by clogging them with thick and sticky mucus. Repeated infections and blockages can cause irreversible lung damage and death. CF can also lead to frequent sinus infections, diabetes mellitus, difficulty with digestion, and infertility.
The most consistent aspect of therapy in cystic fibrosis is limiting and treating the lung damage caused by the thick mucus and infection with the goal of maintaining quality of life.
THERE IS NO CURE FOR CF and most individuals with cystic fibrosis die young: many in their 20s and 30s from lung failure. However, with the continuous introduction of many new treatments, SUCH AS TRIKAFTA the quality and life expectancy of a person with CF is increasing dramatically.
Trikafta is a MIRACLE DRUG that has the ability to drastically transform the lives of CF patients BUT the drug manufacturer, Vertex Pharmaceuticals, a large biotech company based in Boston, was not making it available in South Africa ,India or virtually anywhere in the developing world.
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RECENTLY THIS HAS ALL CHANGED and we were excited to make the following announcement.
It is with massive excitement that SACFA and its affiliated doctors can announce that a deal has been reached through a patient-support NGO to start supplying Trikafta® in full recommended dose to eligible patients with CF in SA who are on top-end medical aids (e.g. Discovery Health Comprehensive Plans) at no additional cost to patients! Patients who are on other medical aids besides Discovery Health or who can afford any co-payments that their medical aid won’t cover, may also apply to the program but we don’t know yet if other medical aids will cover the cost in full. Trikafta® is still not registered in SA, so SAHPRA Section 21 approval every 6 months is still required. It will be imported and distributed by a local company which will make it available through your pharmacy once all the approvals and paperwork have been obtained and submitted. We advise all patients to contact your doctor/CF clinics to inquire about the program for more information.
Patients already on the generic version from Argentina in full or reduced doses, who qualify for the program, must discuss and plan with their doctors on how to switch to Trikafta. Patients who will be starting Trikafta® for the first time will also need to follow the same steps.
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We would like to thank the tireless efforts of so many campaigning for access to life-saving CF medication and remain committed to the campaign for affordable access to treatment for ALL eligible South African CF patients until no patient is left behind.
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Please go to www.sacfa.org.za for more information on how you can assist us.
You can also mail us at info@sacfa.org.za
