KKM Play God?
Multiple myeloma is a rare form of blood cancer. My wife has been diagnosed with the disease 7 years ago. Since then she has been undergoing chemotherapy treatments for the first four years at Ampang Hospital, Kuala Lumpur, and then at Hospital Raja Perempuan Bainun (HRPB), Ipoh until now. The haematology specialists from both hospitals have more or less exhausted the types of chemo drugs used on her, at best they retard the cancer cells. Earlier on, she had stem cell treatment at Ampang Hospital and this gave respite of good health for a couple of years before relapse.
Lately, the cancer cells have become aggressive and my wife has been in and out of hospital. Now, she is much weakened. For the latest treatment, and as a last resort, the specialist at HRPB, Dr. Kamini recommended the use of Darzalex, weekly doses for the first month, subsequently fornightly and later on monthly. She had the first two doses already and the third next week.
Both of us are retired governments, my wife a former teacher and also lecturer at UKM and UITM. I was with MARDI for 20 years. I have applied to MARDI to pay for the expensive drug, RM12,800 for each dose of 2 vials supplied by MS Ally. Time is not on our side as the approval will take time as MARDI has to get the go-ahead from the Kementerian Kesihatan Malaysia (KMM), so for the beginning we pay first and to get reimbursements later once approved. We are confident that it will be straightforward case because MARDI has no stipulation as to the cost. Lo and behold, we got word ie. unofficially from the KMM people that they cannot approve use of the drug because it is expensive and not in their list!
Are they ignorant that the party responsible payment of the drug is MARDI not KKM. If the drug is not the list, there must be a committee to review it because the medicine world changes by the hour due to their (west) innovative research. We just relax and say they have done it all. Is to review the list something big and difficult? We are talking about saving life, not money. Is life that cheap? Let us not play god. Anyway, the drug has been on compassionate list before, why KMM pulled it back? Each cancer patient has his/her own chemo treatment regime accordingly, thus not many need to use Dovralex. This further adds to the cost .
If they do not approve (officially) then we are going to exhaust all avenues of appeal to KMM up to the Minister and even up to PM. We have nothing to loose. We perceive it as an injustice to deprive my wife getting the treatment. Nobody wants to get cancer! The Ministry must listen to reasons and approve the drug use. Thank you. I will do anything for my wife, my love. I will solo picket if needs be.