Patients with neuroendocrine tumors ask Health to authorize Somatulin’ instead remedy to the generic Myrelez, with provide issues. unfold extra for a very long time“As quickly as I cease taking this remedy, the metastasis will unfold to different organs and that’s the place life ends”
José Manuel Vázquez, 63 years previous, has 4 totally different tumors that don’t have anything to do with one another. A leukemia; one kidney; one other prostate and one other neuroendocrine. The one with the worst prognosis is the latter, since it’s a sort of pancreatic tumor with metastasis within the liver. He was identified in 2018 and, in precept, it evolves slowly so long as he’s medicated.
The first illness that appeared in his life was leukemia eight years in the past. He was handled with chemotherapy and since then, he has been in remission. The second was the neuroendocrine. The frequent revisions positioned the opposite two, with a really small measurement. In all this time they’ve eliminated half of his pancreas, his spleen, his left kidney, and shortly they are going to take away his gallbladder. In addition, subsequent month will start to provide radiotherapy to deal with the prostate tumor.
Medication to trick the tumor into not spreading
But, let’s go by elements to clarify this story. José Manuel started taking Somatulina -developed and marketed by Ipsen Pharma- after the analysis of the neuroendocrine tumor. It is a pre-filled syringe to be injected at residence each 28 days. It is a hormonal remedy that tries to trick the tumor into not spreading. It doesn’t remedy, however it does forestall the tumor from spreading additional for a very long time.
Last yr the patent for Somatulina (lanreotide) was launched -whose worth is presently round 800 euros for every dose (it reached 1,200 euros) though it’s financed by Social Security- and Myrelez, the generic drug, started to be prescribed , with the identical method, (about 500 euros, additionally paid for by Social Security), from Advanz Pharma.
For three or 4 months, José Manuel had no downside getting the pharmacy to produce him with Myrelez, which have to be ordered two or three days earlier than. The first scare got here final September when the pharmacy informed him that he could not promote him Myrelez as a result of there wasn’t any. “When I informed them to provide me Somatulina then, they informed me that Social Security didn’t enable them to produce Somatulina as a result of it was rather more costly,” he remembers. “What may I do? I want that remedy. This will not be paracetamol, there’s no and you’ll put up with the headache. This is a drug that I am unable to wait per week or 10 days to manage. If it is the fifteenth of the month, it is the fifteenth. I am unable to put it on the twenty fourth. It’s a drugs that dissolves within the physique over the weeks and when 28 days go by you now not have any remedy and that is why it’s a must to give your self one other injection. The worst factor is the uncertainty of when it is possible for you to to have a drugs that that you must stay as a result of if not, the metastasis will advance. And if the metastasis progresses, you can provide up.
No provide capability
That first time the issue was solved 12 days later when pharmacies had been allowed to produce Somatulin as a substitute of Myrelez. “Someone up there accepted the laboratory that Myrelez sells as a result of its worth was a lot decrease than Somatulina, however they didn’t understand that the demand was going to be the identical as at all times and that they didn’t have the capability to produce,” says José Manuel.
The prevalence of this illness is seven individuals per 100,000 inhabitants. In virtually 70% of instances, the illness is in a complicated state on the time of analysis and systemic therapies are key to stopping the development of the illness.
At the start of January, pharmacies resumed supplying Myrelez, however once more, within the final month, provide issues have reappeared. “It was my flip to manage the remedy the final week of March and there was none. When I requested them to provide me Somatulina, they informed me once more that Social Security didn’t enable it, ”she says.
Issues till June 15
The Spanish Medicines Agency acknowledges on its web site that Myrelez has had provide issues since April 12, however that these will finish on May 15. “This final date will not be true. The laboratory itself has acknowledged the Association of Patients with Neuroendocrine Tumors (NET-Spain) that the availability issues might proceed till June 15. Because of cash there are lots of sufferers who should not with the ability to have our remedy. The reality of the matter is why it was modified to a laboratory that’s not able to supplying, ”he factors out.
Fifteen days after José Manuel needed to take the final dose of Myrelez, his pharmacy miraculously bought him a dose. The drug is presently out of inventory. “I’ve about eight or 10 metastatic lesions within the liver. For now they’re very small and as an example that they’re feeding on the hormones of the drugs, that are in command of tricking this metastasis in order that it doesn’t advance. But the second I cease taking these hormones, he’ll discover his life and feed on what he catches. Therefore, the metastasis will unfold to different organs and that’s the place life ends ”, she assures.
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