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!
But that is what the OMS is; it is complementary. Even George Jelenik will tell you that.
The OMS program cannot substitute for a DMT. I have several patients using walking sticks and wheelchairs who tried to manage their MS with aggressive lifestyle modifications.
For readers of this newsletter I am big proponent of aggressive lifestyle modifications including the OMS programme, but only as a complementary therapy.
Careful not to put words in my mouth. I never meant OMS is the cure for all. Neither are dmt's ofcourse. And I'm not so sure Jelinek calls OMS complementary. From the OMS website: "Some people with MS choose to take medication to get their symptoms under control. This is not in conflict with the OMS Program. We advocate doing whatever you can to lead a better, healthier life with MS." Sounds more like the other way around. Anyway, I wasnt here for a semantic discussion ; )
Never heard of OMS, so you've done a good job putting it out there. I went to it on-line and spent a couple hours clicking around. Be aware, Clara, that there is a segment of the population in general and MS in particular, which likes to discount medicine and science. While I saw lots of scientific reference, I'd have to spend time to convince myself it is not hand-picked for the purpose. My outside unsubstantiated impression is that OMS could be a fertile ground for (I hate to use the word) cult-like adherence to program philosophies within its ranks. Your continued insistence to describe it as something more than "just" complimentary supports my point. I'll keep poking around there. Yes, the diagnosis of MS may call for skills and traits that have to be learned. But joining a new social group with peer pressures, I don't know if people are up for that.
Hi Tom, I was actually hoping to distinguish myself from those that distrust science, and yet maintain that OMS can be enough to manage the disease (again: no guarantees). Especially in countries or circumstances where getting adequate care is not self-evident, I thought it could be a useful instrument.
In my experience the program indeed attracts many patients who discount medicine, but that's just people right. I have only ever felt OMS-peer pressure through Facebook, which is easily clicked away whenever it goes awry.
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!
AHSCT is an approved therapy in the UK, but not first line.
How about the OMS program (diet, exercise, stress reduction, vit D)
Yes. But the OMS is not a DMT. It is complementary not an alternative to a DMT.
Obviously not a DMT and ideally one starts on both. But many on the program do well without any DMT, no reason to call it just complementary
But that is what the OMS is; it is complementary. Even George Jelenik will tell you that.
The OMS program cannot substitute for a DMT. I have several patients using walking sticks and wheelchairs who tried to manage their MS with aggressive lifestyle modifications.
For readers of this newsletter I am big proponent of aggressive lifestyle modifications including the OMS programme, but only as a complementary therapy.
Careful not to put words in my mouth. I never meant OMS is the cure for all. Neither are dmt's ofcourse. And I'm not so sure Jelinek calls OMS complementary. From the OMS website: "Some people with MS choose to take medication to get their symptoms under control. This is not in conflict with the OMS Program. We advocate doing whatever you can to lead a better, healthier life with MS." Sounds more like the other way around. Anyway, I wasnt here for a semantic discussion ; )
Never heard of OMS, so you've done a good job putting it out there. I went to it on-line and spent a couple hours clicking around. Be aware, Clara, that there is a segment of the population in general and MS in particular, which likes to discount medicine and science. While I saw lots of scientific reference, I'd have to spend time to convince myself it is not hand-picked for the purpose. My outside unsubstantiated impression is that OMS could be a fertile ground for (I hate to use the word) cult-like adherence to program philosophies within its ranks. Your continued insistence to describe it as something more than "just" complimentary supports my point. I'll keep poking around there. Yes, the diagnosis of MS may call for skills and traits that have to be learned. But joining a new social group with peer pressures, I don't know if people are up for that.
You may find this old blog post of mine helpful:
https://ms-selfie.blog/2021/04/15/lukewarm-lifestyle-wellness/
Thank you Doctor; fascinating stuff beyond the obvious subject matter. Thank you too Clara.
Hi Tom, I was actually hoping to distinguish myself from those that distrust science, and yet maintain that OMS can be enough to manage the disease (again: no guarantees). Especially in countries or circumstances where getting adequate care is not self-evident, I thought it could be a useful instrument.
In my experience the program indeed attracts many patients who discount medicine, but that's just people right. I have only ever felt OMS-peer pressure through Facebook, which is easily clicked away whenever it goes awry.