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RE: Jumped in with both feet

cll051362 — Wed, 19 Nov 2008 17:21:00 GMT

Quick Update, even though the walk is long over. We had a bunch of Cub Scouts join us for the walk. Even though this was our first time out, our team came up just short of $2,500. I'm thinking I'll donate the last $35 myself just to make it. I keep all cancer patients in my prayers.

RE: Do the costs of some cancer medications outweigh the benefits?

lucasdiver — Mon, 13 Oct 2008 18:36:01 GMT

I'm 28 and was just recently diagnoised with CML on September 3rd 2008. I'm on Gleevec now and have so far had a good respose to it and it seems to be working to stop the the Ph chromosome. Both my doctor and the tranplant center say I should continue treatment with Gleevec and do not recommend anything else at this time. I have major medical coverage and no prescription coveage with a large insurance company, but they do not cover the $4000 per month for the drug to keep the cancer at bay, and because my wife and I make more than $40,000 per year, we do not qualify for the Novatis Patient Assitance Program. I find it absolutely absurd that there is no help for a family who makes over $40,000 per year to afford a medication that costs $48,000 per year (while the generic costs 90% less). I also read in my research that Novartis only covered 10% of the orignial developmental cost of Imatinib Mesylate (Gleevec)with 90% coming from federal, state and local grants, yet they receive 100% of the profits from the sale of the drug.

Norvartis also filed a large lawsuit in India to prohibit generic manufacturers there from making generic Gleevec. There was a large outcry from the international community and the Indian government denied their request for protection under their patent laws. If they had won, this would have set a precident for other money hungry drug companies to charge whatever they wanted while people who really need the drug and cannot afford it, would die.

All in all, I must do everything that I can to pay for the drug to stay alive. It's worth it for me to be here with my wife and family that I love.

RE: Do the costs of some cancer medications outweigh the benefits?

millss — Fri, 26 Sep 2008 15:35:10 GMT

The following is a response from Patient Services at LLS:

winmo - Thanks for your response. It's challenging enough dealing with cancer, let alone having to deal with the financial costs that go along with it. In case you are not aware, our Co-Pay Assistance Program is now covering up to $5,000/year in healthcare costs for patients with CML who qualify. You can learn more about how it works by going to www.lls.org/copay.

RE: Patient Programs Update

runningwriter — Thu, 25 Sep 2008 02:12:52 GMT

I see that there will now be a support group sponsored by LLS in Western Mass at the Cancer House of Hope. I'm glad to see this happening. Often blood cancer survivors get "left out."
I am writing about my battle with leukemia in my blog, which is at runnerwrites.blogspot.com
I will probably do a post about the new group.

RE: Do the costs of some cancer medications outweigh the benefits?

winmo — Sun, 14 Sep 2008 22:21:47 GMT

My co-pay has increased 3 times in the past 2 years. I first paid a $30 copay for a 3 month supply for 400mg/day for Gleevec, then the insurance decided to name it a "specialty drug" and had my physician complete monthly prescriptions forcing me to pay co-pays monthly, or $50/month. My employer will now change prescription providers and I have been informed that I will be forced to pay up to $100/month for the specialty drug. In addition, convenience of obtaining the medication has become complicated since it is not delivered through a neighborhood pharmacy. The provider decided that it is delivered through UPS to my home and requires a signature because of the high cost, which is difficult since I work full-time and am not home during established delivery times. It's ironic that Gleevec has made me well enough to work full-time with insurance coverage, but the high cost (not CML) makes normal life difficult

RE: September is Leukemia, Lymphoma and Myeloma Awareness Month

rksar — Fri, 05 Sep 2008 21:15:36 GMT

great stats! I'll use this in spreading the word and getting more donations.

RE: Who? What? and Why?

LEGGS — Wed, 20 Aug 2008 18:22:12 GMT

Well Mrs. F,
I cannot believe you are doing this. Now I must say I have seen you do some crazy things in my day, but an entire marathon?!!
You definately are my twisted cousin, because I have done 2 1/2 marathons since college & would Love to accomplish what you are doing someday. Maybe we can do one together in the next years!

RE: Running Intervals

KellyMBerry — Tue, 12 Aug 2008 21:00:45 GMT

Hey Heidi, today was my first time blogging and I happened to read this one of yours. Might I suggest visiting Jeff Galloway's website regarding intervals? http://www.jeffgalloway.com/training/walk_breaks.html Check out his suggestions for shorter intervals. By running for shorter intervals (from the beginning of your workout) you are more likely to be able to stick to the intervals all the way through your workout or race! He has a lot of GREAT information on his website and seriously, people who do his intervals always look and feel much better at the end of the race than those who don't!

Hope to see you in San Fran really soon! You're the lucky one who'll be finishing 13.1 miles ahead of me! :^)

Good luck!

RE: Do the costs of some cancer medications outweigh the benefits?

millss — Fri, 08 Aug 2008 16:02:25 GMT

The following is a response from the Office of Public Policy at LLS:

Hillstfr – Thank you for your response. We want to apologize if it sounds like LLS is meaning to answer the question “do the benefits of a drug outweigh the cost?” for a patient. We believe that patients and their doctors need to come to these answers on an individual basis. We also do not mean to slight the significant advances that Gleevec has made in survival rates, length of survival and quality of life for the patients taking it. Gleevec is a breakthrough in the treatment of cancer and LLS is very proud to have funded Dr. Druker in his research.

Unfortunately, we also know that drug co-payments are skyrocketing and sadly not all treatments are as effective as Gleevec. The example we used was Avastin, which can cost nearly $100,000 a year for individual patients. Studies have shown that the drug prolongs life by a few months, but unfortunately those studies have also been inconclusive on whether the drug was even the cause of that increase. We want to make sure that patients are truly experiencing an increase in quality of life when paying so much for a drug that claims it will do that.

The original intent of the blog post was to find out if blood cancer patients are being affected by these increasing co-payment costs so that we can use those examples when we are talking to both the cancer community and legislators. Another reason is to find a way to reform the health care industry, a hot topic this election season. We welcome the chance for patients and staff to have an open dialogue on topics like this, and we appreciate you taking the time to share your thoughts on the subject here on our blog.

RE: Do the costs of some cancer medications outweigh the benefits?

hillstfr — Thu, 07 Aug 2008 00:11:51 GMT

"Do you rely on Gleevec or any other high priced medicine? Do the benefits outweigh the cost?"

This seems like a very peculiar question to ask an individual. Gleevec is responsible for extending the life of cancer patients. Would you expect anyone to say that they would rather have their life shortened than have spent the money it cost to purchase the Gleevec? I may be wrong but that seems like an unlikely situation - maybe someone will say they would have rather left a larger inheritance than they can now, but that seems like that would be a terribly small universe of individuals.

Alternatively a social science researcher could likely monetize the value of Gleevec and other life-saving drugs in the aggregate. It doesn't seem too complicated to determine that on average Gleevec extends life by X months. And during those months of life the average patient contributes $Y to the economy. The development and cost of Gleevec was $Z. Obviously this is a gross oversimplification, but this is exactly the kind of work actuaries and economists perform every day.

That is a vastly different question than asking Bob whether the benefits (living longer and/or with higher quality) outweighs the cost of the medicine. Assuming the medication is effective, I can't imagine someone would in effect say "in hindsight, I shouldn't have taken those drugs - those extra months/years weren't worth it."