Good news. Just received the following response from Merck MENA (middle East and North Africa):
Availability: Palestinian MOH has received Rebif 44 mcg supply in 2022 to cover their estimated demand for West Bank and Gaza Strip for the year.
Process: The Palestinian MOH has an official process for dispensing medications, where patients must be enrolled in the MOH list of patients to receive their respective medication. To be enrolled, all patients must complete and submit an application to the MOH, and accordingly, the MOH can dispense the medication to them on monthly basis, free of charge.
Support: Due to the security situation in Gaza Strip, Merck does not have a PSP/PAP there, however, we do have in West Bank. Merck’s PSP nurse in West Bank would gladly support this patient in completing the application and guiding here through the above mentioned process (Merck PSP/mobile number ***).
To be blunt with what seems to be some sort of postcode lottery regarding MS treatment in the UK its not so different here I’m afraid. My wife two years after initial diagnosis- no neurologist follow up, no determination of type of MS, no ‘frequent’ scans (had to ask for one after two tears of in action - still waiting 8 weeks later to even get an appointment letter let alone an appointment). So no determination of type of MS and if appropriate DMT/antiviral treatment.
Meanwhile her disability is getting worse.
Tbat doesn’t mean I haven’t got huge compassion for people in a similar situation in lower income countries and they deserve treatment and answer just as much but things need to change here too. The feeling of despair of disability increasing in the face of inaction knows no borders.
Sep 10, 2022·edited Sep 10, 2022Liked by Gavin Giovannoni
Recently Mark Cuban CostPlus Drug company has begun carrying Dimethyl Fumarate, generic Tecfidera. Their cost per month is around $60. They do not take insurance, so this is a direct to consumer cost. This is only available in the USA.
While dimethyl fumarate is considered mid-efficacy it is substantially better than the risks associated with no DMT. Many people with MS who are unable to afford DMTs for insurance reasons could benefit from this new option.
I’ve been spreading the word about this online to people with MS in the USA as much as possible.
I have also wanted to move to the UK for access to stem cell w chemo.
What I find infuriating is that I have failed many drugs and want to give these absurdly costly remainders in my possession to people who can’t afford them and have no access, but it’s illegal for me to do so. There needs to be a work around for this. Find one and she’s welcome to my extra Vumerity. In the interim, I recommend keto, lions mane, alpha lipoic acid and exercise. I was undiagnosed for decades and it’s what helped me.
How close do you think we are from approving AHSCT as a standard treatment?
Similar to people getting treated quickly and aggressively for cancer. I believe it should be a choice and be available for anyone who wants it. We need to push for this as opposed to convincing doctors to stop treating in the escalating mode but hit this hard and fast!
Good news. Just received the following response from Merck MENA (middle East and North Africa):
Availability: Palestinian MOH has received Rebif 44 mcg supply in 2022 to cover their estimated demand for West Bank and Gaza Strip for the year.
Process: The Palestinian MOH has an official process for dispensing medications, where patients must be enrolled in the MOH list of patients to receive their respective medication. To be enrolled, all patients must complete and submit an application to the MOH, and accordingly, the MOH can dispense the medication to them on monthly basis, free of charge.
Support: Due to the security situation in Gaza Strip, Merck does not have a PSP/PAP there, however, we do have in West Bank. Merck’s PSP nurse in West Bank would gladly support this patient in completing the application and guiding here through the above mentioned process (Merck PSP/mobile number ***).
To be blunt with what seems to be some sort of postcode lottery regarding MS treatment in the UK its not so different here I’m afraid. My wife two years after initial diagnosis- no neurologist follow up, no determination of type of MS, no ‘frequent’ scans (had to ask for one after two tears of in action - still waiting 8 weeks later to even get an appointment letter let alone an appointment). So no determination of type of MS and if appropriate DMT/antiviral treatment.
Meanwhile her disability is getting worse.
Tbat doesn’t mean I haven’t got huge compassion for people in a similar situation in lower income countries and they deserve treatment and answer just as much but things need to change here too. The feeling of despair of disability increasing in the face of inaction knows no borders.
Recently Mark Cuban CostPlus Drug company has begun carrying Dimethyl Fumarate, generic Tecfidera. Their cost per month is around $60. They do not take insurance, so this is a direct to consumer cost. This is only available in the USA.
While dimethyl fumarate is considered mid-efficacy it is substantially better than the risks associated with no DMT. Many people with MS who are unable to afford DMTs for insurance reasons could benefit from this new option.
I’ve been spreading the word about this online to people with MS in the USA as much as possible.
https://costplusdrugs.com/medications/dimethyl-fumarate-120mg-bottle-of-capsules/
Best wishes to this woman, I am glad she was able to contact you and pray she receives the treatment she is searching for.
I have also wanted to move to the UK for access to stem cell w chemo.
What I find infuriating is that I have failed many drugs and want to give these absurdly costly remainders in my possession to people who can’t afford them and have no access, but it’s illegal for me to do so. There needs to be a work around for this. Find one and she’s welcome to my extra Vumerity. In the interim, I recommend keto, lions mane, alpha lipoic acid and exercise. I was undiagnosed for decades and it’s what helped me.
How close do you think we are from approving AHSCT as a standard treatment?
Similar to people getting treated quickly and aggressively for cancer. I believe it should be a choice and be available for anyone who wants it. We need to push for this as opposed to convincing doctors to stop treating in the escalating mode but hit this hard and fast!
How about the OMS program (diet, exercise, stress reduction, vit D)