- Join medical aid for assistance in case of illness
- Became ill in September 2006
- Diagnosed with CBD in February 2007
- Require medication called carbilev (now 8 tablets a day) and Lyrica (2 a day)
- CBD (like MND etc) is not listed as a PMB illness
- Discovery, however, agrees to cover the cost of carbilev as a chronic benefit but Lyrica has to be paid for out of savings account and eventually own pocket (R400 month)
- Feb 2014 Pera changes employer, so we move to GEMS
- Over the years, the type, frequency, dosage, timing etc have been altered in order to get maximum benefit from carbilev
- They agree to cover cost of generic medicine only (Teva Carbilevo); I have to pay Lyrica out of pocket
- I would have to pay in the difference if I continued with carbilev (R250 month)
- After consultation with dr, patients etc I agree to change to carbilevo (even overseas discussions) and have to continue with Lyrica
- But no carbilevo available for last two months – so pay in the difference for carbilev (and in full for lyrica)
- Despite numerous calls by pharmacist and Pera all over the country they are unable to source meds
- Pera manages to source tablets at DisChem
- However, we are not allowed to buy it there because Provincial is our registered pharmacist with GEMS (may only change that after 6 months)
- So I get involved (pull strings) to move tablets from one to the other pharmacy
- Then Provincial manages to source carbilevo
- On carbilevo since Sunday – experiencing slight shiver – lets see what happens and hope it works!
- All sorted for this month at least (we hope)
- Options: continue as is; get medical aid (legislation) to recognise neurological illnesses as PMB’s; sell of assets; get welfare assistance; donations; apply to become a state patient
Tuesday 18 March 2014
7 years 6 months on …
The stories are happening at an alarming rate. World news that is, and with the benefit of modern technology, it all unfolds right in front of you in your living room.
One needs lots of time to follow it all. And I have lots of time. As the CBD progresses, I am spending more and more time at home. The TV and the internet has become my window on the world.
Its been civil war in Syria, the take-over of Crimea by Russia, the disappearance of the Malayan Boeing 777 and the Oscar Pistorius murder trial. Theories and more theories abound.
But another story for us is the ongoing fight with our medical aid. It’s not a unique fight.
Because of a change in Pera’s employment status, we have moved from one medical aid to another. Despite assurances that my medication would be covered, we have now for two months being fighting to get my Carbilev and my Lyrica tablets paid for by the medical aid. These meds are my life-savers and after seven years, we have got the dosage, timing and frequency down to a fine art. Now the new medical aid says NO, we won’t pay for those, you need to take generics.
We haven’t even got to the physio, bio, massaging, exercising etc etc yet!
The fact that degenerative brain diseases are not included as PMB’s (Prescribed minimum benefit illnesses) does not help at all.
So I put it to you, those of us with these illnesses are being discriminated against, and so we have another fight on our hands.
It’s easy dealing with CBD. It’s hard dealing with beaurocracy.
©2012 Edward C. Lunnon
Tuesday 11 December 2012: 6 years 3 months on …
Physical: Advantage CBD / Mental: Advantage CBD
Joost van der Westhuizen, ex-Springbok scrumhalf and captain, appeared on the TV programme Carte Blanche again this past Sunday. He has MND – Motor neurone Disease and has appeared on TV a few times and often in the print media since his diagnosis at the beginning of last year.
In the United States MND is often called Lou Gehric’s disease – after a famous baseball player who contracted the disease. In South Africa now, people often refer to Joost’s Disease! I repeatedly get asked whether I have what Joost has!
Thank God for Joost!
Because of his celebrity status he has helped to raise the status and awareness of MND and other neurological illnesses.
But his situation should also raise a number of other issues and many questions.
For every Joost out there, there are hundreds of other South Africans with similar neurological illnesses who not only battle the disease but also need the support system and funds to deal with their battle.
How best can we help those people?
By law, medical aids in this country have to cover certain illnesses. These are referred to as PMB’s – prescribed minimum benefits. A certain number of diseases/conditions (such as cancer, HIV/AIDS, TB etc.) are defined as PMB’s and have to be covered for certain treatment by a medical aid.
Neurological illnesses (other than Parkinson ’s disease) are not classified as PMB’s which means that all treatment required for such illnesses, such as medication, physiotherapy, speech therapy, wheelchairs and other devices, home care, adaptation of homes, etc are not covered by medical aid other than payments made out of a general medical savings account should there be an available balance. This places an unbelievable financial burden on the patient and family.
How best can we be lobbying for the lawmakers to include neurological illnesses as PMB’s?
Joost has a foundation, J9, which is raising funds for research.
Where is this research being carried out and what research is being done?
How best can we be assisting in order to make this research beneficial to all patients?
How best can we be lobbying government to assist in assisting people with neurological problems?
Joostlike! The questions don’t stop … and the answers don’t come!
I hope you understand this:
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