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Lecanemab Treatment in the US; Remternetug trials in the UK/Europe?

Hello. I am new to this forum. My beautiful Mother has just been diagnosed with Alzheimer's. She recently tried for the UK-based Aducanumab trial but sadly failed the criteria test by a few points. We want to explore the option for her to go to the US for Lecanemab treatment (as this is now fully FDA approved over there) but are finding it difficult to get information on where in the US this can be accessed and how to go about it. Can anyone help please?

Also, along side this, does anyone know if there are any upcoming trials for any of the Alzheimer's disease-modifying drugs currently emerging - Donanemab, Aducanemab, Lecanemab, Remternetug - in the UK or Europe?

Thanks.

Comments

  • Jo C.
    Jo C. Member Posts: 2,939
    Legacy Membership 2500 Comments 250 Likes 100 Care Reactions
    Member
    edited September 2023

    Hello Meme1 and a very warm welcome to you. I can well understand how much you are supporting your beloved mother and striving to find ways to help her as much as can be.

    Move with strict caution and also checking things out first to even see if it is doable. This is no small thing and there can be significant concerns as well as risks. Special circumstances may well be an issue if coming from out of the country to obtain the infusions; that should be carefully researched with much planning ahead with the place that you feel may be your provider. You would not want to make the trip here only to find that you cannot access what it is you wish.

    In order to find the various drugs you mention and all trials; one would be best served by using Google Search. One can also contact the drug companies of manufacture and could possible get information from them re trials. We here would not be knowledgeable re the multiple drugs mentioned, and where trials might be in other countries such as in the UK or across Europe.

    It may not be easy to find a provider to administer the Leqambi drug over the period of time it will need to be done being out of country. IV infusion of the drug must be done every two weeks for a protracted period of time. You may want to contact the manufacturer, Eisai, directly to find out just where the best access points would be:

    Eisai Medical Information

    For Medical Information (or to report an Adverse Event or Product Complaint): 1-800-274-2378

    Monday - Friday, 8:30 am to 5 pm ET

    http://us.eisai.com/

    Not everyone will qualify for use of this drug. The patient needs to be in the very earliest stage of disease; MCI is mentioned frequently as a marker. Many MDs are not administering this drug due to what they feel are risks versus questionable benefits for the patient. Research into providers will be of benefit but may take awhile.

    It appears the drug is administered Intravenously every two weeks. Annual Cost: $26,500 for the drug alone if not covered by insurance not to mention the cost of healthcare administration of the drug, etc. Will need scans and ongoing testing and medical monitoring and assessment in that the person receiving this drug may need to be on it for three years which will increase costs dramatically. Coming from out of country would be a huge risk to be able to obtain the drug. I would make direct contact and question the problems and possibilities of refusals.

    NOTE: The following link is of interest. Evidently the drug trials may indicate that male patients received better results than did female patients by quite a margin; yet there are questions.. Here is some information outlining how much of a gap there is between male and females for effectiveness with women being at the low number in the results:

    https://www.axios.com/2023/07/11/leqembi-azheimers-drug-women-men-efficacy

    Here is some more information from the University Of Southern California San Francisco for those who are not familiar with the drug:

    I send best wishes to you and hope that you will be able to find the best care for your dear mother; you are a very loving and caring daughter,

    J.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more