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Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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eloise999 | @eloise999 | 2 days ago
In reply to @loribmt "Hi @eloise999 You posed a great question as to whether patients with ET needed to fail..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @eloise999 You posed a great question as to whether patients with ET needed to fail on HU first before they can receive Besremi. Apparently that’s not the case. After a little more digging this is what I found this morning regarding eligibility. It appears there is no requirement limit to who may receive the drug.

This quote is from Curetoday.com (link to full article below)
“The approval, announced by PharmaEssentia USA Corporation, makes BESREMi the first new FDA-approved treatment for essential thrombocythemia in nearly 30 years. >The approval applies to adults with ET regardless of their genetic profile or disease status, including people who have been newly diagnosed and have not previously received cytoreductive therapy.”

From Curetoday.com:
https://www.curetoday.com/view/fda-approves-besremi-for-essential-thrombocythemia-expanding-treatment-options
A few more links with information on Besremi’s approval Aug 31, 2026.
FDA;
https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-essential-thrombocythemia
~~~~
From Besremi.com
https://besremi.com/et/
This drug has the potential to change course of the disease by reducing the JAK2 mutated cells. But it may not be for everyone and will take consideration from both patients and doctors to make the right decision on treatment plans. It’s certainly encouraging though.

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@loribmt interesting. That is good news, but I am surprised. I guess we will have to see what insurance companies do with it. I am triple negative, so I wonder about this for me.

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nohrt4me (Jean) | @nohrt4me | 1 day ago
In reply to @eloise999 "@loribmt interesting. That is good news, but I am surprised. I guess we will have to..." + (show)
Profile picture for eloise999 @eloise999

@loribmt interesting. That is good news, but I am surprised. I guess we will have to see what insurance companies do with it. I am triple negative, so I wonder about this for me.

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@eloise999 Yes. Approval of Besremi by the FDA does not translate to approval by health insurance companies.

Drug prices are set by how many patient-customers there are: Lots of patients means a company can sell the drug for less. The FDA approval does increase the number of potential patients for the Besremi--all those with an MPN--but the actual population of potential patients with these cancers is still pretty small. That means drug manufacturers will not be able to make a big profit with high-volume sales, and will likely keep prices high for now. Insurance companies may not want to cover all or part of the cost until the price comes down.

Drug companies sometimes offer a payment assistance program for lower-income patients, but these programs will be offered only as long as the company is getting a financial return on the program. They can be discontinued without notice.

The way I read it, overall approval of Besremi is good news, but affordability will continue to be a push-pull between the manufacturers and insurance companies for awhile.

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1995victoria | @1995victoria | 1 day ago
In reply to @dewz13 "@1995victoria my doctor has said both Advil and Tylenol are ok to take. I will usually..." + (show)
Profile picture for dewz13 @dewz13

@1995victoria my doctor has said both Advil and Tylenol are ok to take. I will usually start with Tylenol just for my kidneys’ sake but it doesn’t work as well as for me asAdvil. Also just asked about stronger anti-inflammatories and they said both Meloxicam and Celebrex are ok. I will be drinking lots of water!! Note: I take Hydrea 2x/week. Definitely check with your doctor

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@dewz13 first pain mgmt dr rx'ed meloxicam, oncologist said no, and just tylenol......second pain mgmt oncologist prescribed tramadol, but as a opoid causes constipation and only works for 4-5 hours, then pain comes back.....wakes me during sleep

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