Geseend is die PH pasiënte wat toegang het tot verskeie behandelings. Ek het die volgende artikel ontdek waarin 'n mede PH mater Denneys (wat in 2006 gediagnoseer was) gesels het in 2016 oor die te kort aan beskikbare medikasie in Suid Afrika.
Ongelukkig het ek nog nie terugvoering gekry om te hoor of daar in die afgelope twee jaar nog verdere behandelings bygevoeg is nie maar sodra daar bevestiging is sal ek terug rapporteer.
"A Cape Town woman suffering from pulmonary hypertension, a rare lung disease, has been given six months to live after she says doctors at Groote Schuur Hospital reduced dosages and cut back on her medication which could potentially have prolonged her life.
Pulmonary hypertension is the same disease that killed 20-year-old Jenna Lowe, three years after she was diagnosed with the disease and six months after a bilateral lung transplant.
Like Lowe, Shulman was also misdiagnosed several times before doctors realised what she was suffering from.
Shulman said the Pulmonary Hypertension Association of SA eventually referred her to cardiologist Dr Jan Smedema, and she had been responding well under his treatment until forced to go to the state facility.
Smedema confirmed that Shulman’s condition was deteriorating and said it was disappointing her dosages had been reduced at Groote Schuur.
He said he often had to fight to get the right drugs for his patients.
“I sit on the phone and harass the medical schemes so it’s disappointing to see the treatment she is getting.”
He said pulmonary hypertension was a rare but deadly condition, much like terminal cancer, and it often affected young, productive women.
Smedema questioned why expensive drugs were given to transplant patients yet not to patients such as Shulman.
“It seems there are some doctors that hide in big state institutions without caring for their patients yet still get paid their high salaries,” he said.Denneys Niemandt the former chairman of the Pulmonary Hypertension Association of SA, who was diagnosed with the disease in 2006, said people who did not have medical aid were often left “stranded”.
Even with medical aid, he has to re-apply every year for his chronic medication, and his doctor has to provide written motivation for it. He said the experience had been different when he had been diagnosed with cancer last year.
“Within two days all my medication had been approved.”
“In Europe and the US, there are 15 or 16 types of medication for pulmonary hypertension, some of it free. In South Africa, there are only two officially registered ones that have to be imported at huge cost.”
What was also frustrating, he said, was that his European connections had indicated they would be willing to send medication to South African free of charge but, because of red tape in South Africa, it would be seized and destroyed.
Alaric Jacobs, spokesman for Groote Schuur Hospital, said Shulman was receiving the available medication for her condition.
He said that Bosentan was not a registered medicine in South Africa and there was no generic for it in the country.
What was also frustrating, he said, was that his European connections had indicated they would be willing to send medication to South African free of charge but, because of red tape in South Africa, it would be seized and destroyed.
Alaric Jacobs, spokesman for Groote Schuur Hospital, said Shulman was receiving the available medication for her condition.
He said that Bosentan was not a registered medicine in South Africa and there was no generic for it in the country.
BRON:
https://www.iol.co.za/news/south-africa/western-cape/i-went-to-state-hospital-it-was-downhill-from-there-1989222
