Some People are Climbing Mountains for Myeloma, I'd Rather Take a BEACH WALK!

1/29/2017

Myeloma Crowd has a Beach Walk which will be on March 4th 2017 to raise funds for two Clinical Trials which have great potential but do not fit into the normal model for new drug development. I am not saying this is in any way an indictment of drug companies, because I and most people know without Celgene and Takeda (Revlimid and Velcade) the life expectancy of myeloma patients seeing a myeloma specialist would not have gone from 3 years to now close to 10 years. In addition, both of these companies have shown compassion and local support to the patients and IMF support groups. Daratumamab will put another 3 to 5 years on top of that, but what will provide the next leap forward.

Based on the myeloma crowd research and the opinions of some of the TOP GUNS of myeloma specialists(Dr. Orlowski of MD Anderson, Dr. Ghobrial of Dana Farber, and Dr. Fonseca of Mayo Clinic to name a few) there are two Clinical Trials which are both immunotherapy treatments which could lead to the next quantum leap forward. Patients and their families and of course the caregivers have already given $400,000 towards the first target of $500,000 to fund this research. I have set up a fundraising team called "Alive And Walking for YOU!" and you can become a team member or contribute if you CLICK HERE! You can contribute at my fund raising page if you CLICK HERE!

This is my commitment to you, I have made my team goal of $15000, and if I make this goal I will jump out of an airplane without a parachute! I hope the person I am skydiving with(tandem) has one though. In addition, I will match the first $500 that is committed to the team. in this way, I am backing my words with action. This I know, if we do not find the next successful clinical trial our myeloma journey will end far too soon. Help me to help to save us all! For those who want to get a fast track myeloma education you can also sign up for the 3 day Pat Killingworth's Myeloma Survival School if you CLICK HERE. There are few opportunities like this available. This was a program developed by Pat, a myeloma patient, IMF Support group leader, and author to help to meet the needs of myeloma patients.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

4 Comments

J C

1/30/2017 09:05:47 am

Help me understand. We donate to these GREAT research causes. Then when the new drug comes out, like Dara, it is $45,000 a shot. (Easily a half million a year). Something is terribly wrong with that picture. Damn if we do, damn if we don't. Was told at a top hospital that the price didn't matter, because insurance pays for it. No, insurance doesn't pay for. The insurance company just transfers the funds it collects from it's policy holders and keeps some of it for overhead and profit. When drugs prices increase they just increase premiums. I live in an area with farmers and many small self-employed businesses. Family plans with deductibles now range $30,000 to $48,000 a year. More than a house payment, for some, more than almost all their other living expenses combined. And only going up more. Pharma prices are almost like blackmail, pay up or die. When I am a mother with MM, and I know that every time all that money is spent on me will increase the premiums for my children and all the rest, I am deeply troubled. Please, how do we stop this madness?

Gary Petersen link

1/30/2017 01:33:07 pm

JC, if you follow my blog posts you will note I also have vented my frustration about the current system. You can go to the the twitter hash tag #CYHUN, for a nice summary of my thoughts and several other people who have weighted in. This post has nothing to do with drug pricing, but has everything to do with the fact it is not a drug but a process. It is a process like SCT. If these trials were testing new drugs and not a process drug companies would be falling all over themselves to fund this research. The benefits of engineered T cells and energized T cells will benefit the patients and hospitals or labs which process the T cells, and the hospitals which will then reinfuse them. In addition, these new treatments have the potential to cure, so who wants to invest in a process which you use once and cures. No repeat customers! That is why it is up to us to save ourselves, or chose to sit back and become victims. I see the system is stacked against CURE, but refuse to give up and go home and die! Myeloma Crowd and the Myeloma Crowd Research Initiative is our next best chance for more good years of life. More drugs will be developed and happily funded by drug companies which will give us additional weeks or months to live, But non have the potential of these clinical trials.

A few other notes the cost per infusion of DARA is $5850. The LLS will grant up to $10,000 for drug copay assistance, and myeloma crowd just did a nice write up of drug assistance at www.myelomacrowd.org. Best Regards/Gary

1/30/2017 01:45:10 pm

Thanks for the reply Gary. I may need to tap more of your knowledge soon, as my doctor is suggesting DARA in a couple of months.
I have always felt since we could afford the copay (yes, mine is 10,000) a year, we should pay it and save the LLS money for those that really need it. But then my husband works 70-80 hour weeks at times, so maybe I am pushing the "we can afford it".
Not wanting a cure.. unthinkable...I pray there are a few good men that do, you are proof of that.
I think I read on Beth Morgan's blog that her first DARA infusion was $45,000...hope your number is right, but I have heard other wise.
Yes, I do follow you on twitter, I just don't have my own account.
Godspeed my friend.

Gary Petersen link

1/31/2017 08:14:38 am

JC, our system is broken, and copay is a bandage the good pharma companies provide. In the old days there were no drug co pays, but insurance companies started them to help limit there costs. Drug companies recognize most people can not pay these copays on high cost drugs so they offer copay assistance. For the drug companies it a win because you can afford their durgs and they can pay your copay and still make 80 to 90% of the drugs price. You win because you get to live.

Copay programs at LLS, and MMRF are often funded by pharma companies to help you to make the copay so it is a win win for the patient and for pharma. DARA also has a copay program.

I do think most people, if they are not evil or demented, want a cure, but drug companies want to make a profit so when they do there economic analysis of where to spend their research dollars. It would go something like this. You have two projects which both cost one million dollars to fund. There are 10,000 patients a year and one drug cures and another must be taken every year. Just say one will cost $10 per pill and will cure in 30 days and the other cost $10 per pill and must be taken each day forever and keeps the disease at bay.

The income from your $1,000,000 investment could be:

Drug 1 Cure 30 days times $10 times times 1000 = $30,000/year

Drug 2 Maintain 30 days time $10 times 12 months times 1000
year one = $360,000/year
year two = $720,000

The first project would never recoup its costs while the second drug pays for the drug development in just two years and then the rest is profit. So it is not that anyone does not want a cure, it is that the economics are stacked against one, and the fact the cure may be a process and not a drug makes it far less attractive to a company that makes drugs. Sorry for the long drawn out example, but I was an engineer, did product costing, and business management so I understand how the process can work. Hope you find this of value. Best Regards/Gary

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Some People are Climbing Mountains for Myeloma, I'd Rather Take a BEACH WALK!

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