Once again there was a problem with an expensive drug. It is about the rare disease phenylketonuria, in which some of the patients are on medical treatment, and the rest are on medicated foods. The problems are mainly with the protocols that are given to these patients because the drug is expensive. What do patients face... Pepa Maneva, chairman of the Association of Phenylketonuria Bulgaria, spoke to FAKTI, which sparked a media discussion with the NHSOC.
- Ms. Maneva, what problems do patients with phenylketonuria face when it comes to drug treatment. You recently wrote open letters to the NHIF, was there any correspondence?
- Phenylketonuria is a genetic disease for which there is no treatment - there is supportive drug therapy or one with medicinal foods. It just happened now that my daughter could be without medicine. Every six months, patients with this disease go before a committee at the NHSOC to be given the medicine or medicinal foods.
- How many patients are there with this disease in Bulgaria?
- Since we do not have exact statistics for any disease in Bulgaria, I can tell you an indicative figure. We are talking about somewhere around 130 children, and with the patients over 18 years old, it is a little more difficult, because not all of them stay in Bulgaria. So I can't be sure of the figure for them.
- How much does the medicine you use cost?
- One pack of 120 tablets costs BGN 2,297.93. My daughter takes two packs a month of this medicine. And, as I said, every six months he appears before a commission before the NHSOC in order to be approved and to continue the therapy. And since we appear before this commission every six months, there are various problems with issuing this protocol.
- What happened last time?
- There was a duplication. It turned out that we could not take the medicine because the NHIF approved a canceled protocol. That is, the doctors who monitor the disease have released two identical protocols. One is dropped because there is no way that both are active. But it so happens that the committee has approved the one that is cancelled, respectively, going to the GP, he cannot issue a prescription. There is simply no way to issue a prescription when the protocol is cancelled.
- Are we to understand that the problem is rather purely technical?
- Most likely, because some administrator writes the number of this protocol, which has been canceled, and submits it with the wrong number. But this costs the treatment of one Bulgarian patient - in this case a child, my daughter.
- If a patient runs out of medication, what happens? Is it life threatening…
- Patients with this disease, who are not on medical treatment, use medicinal foods and are on a very strict diet. Patients with phenylketonuria cannot take in protein naturally from food. They can, but in a very small amount, because one of the main amino acids in the human body - phenylalanine - begins to accumulate in the internal organs and leads to very serious consequences such as muscular dystrophy, mental retardation, seizures, skin reactions and many other things. When a patient who is on medication has to go on a strict diet due to lack of medication, it is also a shock - mentally and physically.
- Given that you have such a diagnosis, which is lifelong, why do you have to go before a committee at the National Health Service every six months?
- An interesting question, but it is for the NHIF. I haven't asked them, but maybe I should. This may need to be reconsidered. If it happens once a year, it will be more convenient for patients.
- After all, you've made it and you have the cure…
- Yes, there is a new protocol for the drug, but that does not mean that in six months there will not be another problem with the protocol. Six months ago, we again had a problem with issuing a protocol, due to another type of error on the part of the NHIF. I define this behavior of theirs as mental harassment, which later turns into physical harassment.
- Do you have a supply of the medicine to make up for such time gaps?
- Unfortunately, I don't have The medicine is prescribed absolutely exactly as an amount and for a certain period of time. It doesn't stay to have a stock.
It is high time that the “people” working in the NHIF, stop considering us as just some documents and realize that behind every document there is a human life and its health. Because in Bulgaria, if you have a given disease, it is tantamount to a struggle for life.