Does anyone know of financial aid organization... - CLL Support

CLL Support

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Does anyone know of financial aid organizations that may be out there to help those who may not be able to afford the treatments?

theEXTREMEone profile image
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theEXTREMEone profile image
theEXTREMEone
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18 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

You are located where?

If you are in the U.S., contact the Leukaemia and Lymphoma Society chapter office in your region.

lls.org

Many drug companies also offer treatments at reduced costs, and in some countries treatments are available based on need and on compassionate grounds...

Talk to your treating doctor or clinic, they can help give you available options...

~chris

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to Cllcanada

We're in sync again. LOL! I hate this new format with "Read Next" before responses. Many of them have nothing to do with the question, and i really want to see the replies. I wrote to the HU people and they are working on changing some things around. UGH! Send roses to my funeral. I'm holding my breath.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

In which country?

theEXTREMEone profile image
theEXTREMEone

USA.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to theEXTREMEone

How about a big city... close by?

The reason I ask is some large hospitals have funding, and you might consider a clinical trial at the NIH, everything is free, all diagnostics, CLL expert doctors, CTscans and treatment and follow-up, often for a couple of years... certainly an option to consider...

theEXTREMEone profile image
theEXTREMEone

NIH? National institution of health?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to theEXTREMEone

Yes, nih.gov they often run CLL clinical trials with new cutting edge treatments...

Some trials also help pay airfare within U.S., but it varies from trial to trial...

Cllcanada profile image
CllcanadaTop Poster CURE Hero

The following link has a table breakdown of CLL treatment costs in 2009 in the U.S. These are average wholesale costs and could be higher...

ncbi.nlm.nih.gov/pmc/articl...

New treatments may be close to $100,000 a year for life...like Imbruvica (ibrutinib).

theEXTREMEone profile image
theEXTREMEone

After seeing the wholesale costs I think I'm going to be sick to my stomach.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to theEXTREMEone

Talk to your doctor...there IS financial help available... do you have any health insurance? What about the ACA? I know a couple of people who have gotten assistance...

theEXTREMEone profile image
theEXTREMEone

So far I'm in the Wait and Watch group for the past 4 1/2 years. I just want to be more proactive on the $$. Yes I have insurance but it is with a big yearly

deductible. Anyway there are tough choices ahead. But I do have good news.

1. Zap 70 is 1%

2. IgVH mutated

3. CD 38 neg

No current symptoms.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to theEXTREMEone

The Leukemia and Lymphoma Society has funding assistance for co pays and treatment. They also have advocates in some areas to help patients find help. You might want to sign up for the NIH CLL study for patients who are not currently in need of treatment. It takes a while to get in, but your numbers look good. After the initial appointment travel is covered and there is a stipend for lodging if needed. You also go to the head of the line if you should need treatment and are interested in one of their trials. All medical services at NIH are free.

theEXTREMEone profile image
theEXTREMEone in reply to MsLockYourPosts

Thanks for so many reasons to everyone's thoughts on this. I'll check it out this week and report back!

littleriver profile image
littleriver

No, but if you hear of any perhaps you would let me know? Good luck, where are you?

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to littleriver

Littleriver - He's in the US, though I don't know exactly where. Another resource is cancercare.ca. LRF lymphoma.org has a good list of resources and may also have some financial assistance.

Oh Yes, I reported it too. so annoying!

Cllcanada profile image
CllcanadaTop Poster CURE Hero

This website was designed? Fooled me... it is a logic disaster...

littleriver profile image
littleriver

Thank you Pken.

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