(Imbruvica), Ibrutinib, To live or to die - CLL Support

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(Imbruvica), Ibrutinib, To live or to die

Green202
Green202

Hi,

I have a 50-years old friend who has had CLL since 2013. He had a relapse in early 2020. When he was close to death, he was hospitalized to a private hospital in Turkey and was prescribed Imbruvica from Janssen company. Since he does not have insurance, he bought the medicine himself and spent almost all of his saved money on his treatment. Now his life was saved thanks to Imbruvica. According to his doctor, he must continue with the medicine for life, otherwise the disease will return. Unfortunately, he no longer has the financial means to buy the medicine. I wonder if there are aid organizations or other opportunities that can help him to get his medicine oh survive.

Does anyone have a suggestion for a solution to his situation?

21 Replies
oldestnewest

Sometimes there are compassionate use programs from the company. Not sure if that is a possibility. Is venetcolax availabek in turkey? That can sometimes get people to a state where they don’t need any more treatment. It’s so hard not being able to get Medicine that is so expensive. Here in the UK most of us are given Chemo FCR first line as the government only funds the new Drugs second line except for Certain markers. me. That again can get some people to the point they don’t need treatment for many years.

Try jjpaf.org Not sure if it will work for you, but worth a try.

john

Try contacting the company and have the doctor to help:

jjpaf.org/resources/jjpaf-a...

🙏🏾

Win

there are countries that ignore patent laws and make the drug. I'm not talking about phony ibrutinib-but ibrutinib not made by Janseen

Or you could open a paypal donation fund and use youtube facebook and other to promote this fund u can be suprised by the help of the other people.

lankisterguy
lankisterguyVolunteer

As the other responders say, there are programs in many countries to help in these situations.

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I would suggest having your friend inquire, with help from the doctor and the pharmacy that delivered the Imbruvica/Ibrutinib, to follow the supply chain backwards to find if Johnson & Johnson, Janssen, Pharmacyclics or Abbvie have a compassionate use program in Turkey (all the companies listed have some involvement in Imbruvica).

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Len

Thanks for all the answers. if you come up with other ideas to help my friend, I'm grateful to hear.

Sorry for your friend ... We have the same problem here in egypt and we are facing this with my relative ..

It s much cheaper here ...about 3000dollars for 90pills .... but this is considered a fortune ...

The company doesnt support anything and we re praying each day the cost will go down .

An indian drug is available but not sure about efficacy ....

Is there any other person with CLL who has new experience with Ibrutinib (Ibrunat) from the NATCO company trade mark?

Here is some background info so you have a clearer idea of the corporate players involved:

1) pharamcyclics developed imbruvica and got government approvals for it beginning in late 2013.

2) It did a deal with Janssen (part of healthcare giant johnson and Johnson) to distribute imbruvica in the u.s., while pharamcyclics retained overseas rights. Not sure if your friend's treatment was outside of that original deal or if the deal changed.

3) Abbvie had developed venetoclax for CLL, etc. and wanted to control both, so it bought pharmacyclics in 2015. It remains a subsidiary of Abbvie.

4) Pharmacyclics had developed a program to help patients with financial issues. It is called the You and I program and it continues under Abbvie ownership. i have no idea whether your friend in Turkey would be eligble, but there are contact info to follow up:

youandisupport.com/cost-and...

5) is your friend still in Turkey? If he/she is in the u.s., even if not a citizen, there are non profits that may be able to provide help. PANAPPLY.org is excellent. so is lls.org/copay

I just called the Johnson and Johnson number. Their program is available to those in the US and US territories. bkoffman do you have any information about Ibrunat from NATCO, or other foreign suppliers?

Thank you for your advice. This means a lot when you are alone with a sick friend who really needs help. My friend is from Iran but he went to Turkey and received incredibly nice treatment in Anadolu hospital. The hospital collaborates with Johns Hopkins University (JHU).

I have emailed Abbvie but I have not received a reply yet.

Bonhoa Pharmacy in India sells several types of generic Ibrutinib that are quite cheap as well as the original Ibrutinib that is sold at half price

I am using Ibrunat since Jan 2020. It's working well for me so far.

Thank you very much for your feedback mag1309

If my friend does not find cheaper alternatives to Ibrutinib, he vill die without medicine because he did not receive financial support from anywhere to buy this medicine.

Are there others who use Ibrunat from NATCO with good results?

Thank you for sharing your experiences and your knowledge

zsezse
zsezse in reply to Green202

Hello , i am from Lithuania. I have been taking the Ibrunat since March. lymphocytosis 190 ( 14 march 2020 ) , and 15 ( 11 august 2020 )

Green202
Green202 in reply to zsezse

Hi zsezse, How did you buy Ibrunat from NATCO and how much dose the medicine cost?

Yes I have a whole package he can have. Where should I send it? My Dad passed away on Sept 15.

Admin edit: LoveLightLaughter I’m afraid it’s not permitted to post your personal email address on here nor is it safe or advisable to do so. Please communicate by pm with the person involved.

Newdawn

Hello, I have sent an email. please let me know if you have received my email,

I never received an email

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