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LLS Co Pay Program For Myeloma Reopens, BUT, And It Is a BIG BUTT!

11/17/2017

Note: Sadly the day this was published I received the following update from Dana Holmes. "Gary! The fund is already fully subscribed! I posted an update earlier today...it took less than 24 hour...sigh...they hope to get additional funding, but there is no way to project when."

First the good news, the LLS CoPay program has reopened. Dana Holmes has posted on her Smoldering Myeloma site the following:

A lot of people have worked to make this happen. Dana Holmes, IMF, LLS, MMRF, Myeloma Crowd, Doctors, Patient Advocates, Patients, our pharmaceutical partners. Thank You to ALL, ours lives depend on it!

There are limited funds, and all those who have been previously approved must sign up again. Your prior myeloma approvals are no longer in force, and you must call to reapply for the program. This time it has changed in a few important ways. The first of which is if you apply and are approved the money will be guaranteed for one year from approval. Also to keep your approval active you must enter expenses at least once every 3 months. Funds are limited, so to obtain funding it is first come first served. The copay amount has been reduced from $10,000 to a maximum of $7500. Once the funds are allocated no more applications will be accepted until new funds become available. You can learn more about the program if you CLICK HERE.

So where is the BIG BUTT? As mentioned before all people except seniors have or can buy private insurance and the federal government can not mandate a no copay policy. Drug companies can provide copay assistance DIRECTLY to the 85% of Americans that fall into this category. However for the 15% of the population who are seniors, drug companies are forbidden by law from providing direct copay assistance. To me this sounds like an issue of Federally mandated AGE DISCRIMINATION. And sadly this is a crisis for seniors, but for African American Seniors with myeloma it is 2.5 times the crisis. African Americans are 2.5 times more likely to get myeloma than the general population. As stated previously, the Federal Government made this provision to promote the use of generics for Medicare patients, but did not exclude single source or patented drugs from this program. For more information on this Medicare Faux Pas or BLUNDER CLICK HERE.

So the lack of copay assistance for Medicare patients is a key part of the BIG BUTT. If drug companies could not pay the copays directly, then maybe they can give third parties like LLS, PAN, etc, money, and these non drug company third parties could then provide the copay to Medicare patients and thus solve the Federal COPAY BLUNDER!   This was great for the medicare patients who could now afford their life saving drugs. Myeloma patients could have copays of $10000 to $30000 per year or more than their Social Security Checks. The equation is NO COPAY = NO DRUGS = SENIOR GENOCIDE!

As one fine Mayo Doctor once said, this makes sense to the drug companies because they can spend $10000 to $20000 in co-pays and sell their drugs for $120,000 to $300,000. Who wouldn't spend $10 to make $120. Something obviously has gone very wrong because the 3rd party Well went dry for myeloma in March for PAN and in September for LLS. It did not however go dry for lymphoma and leukemia. So why myeloma? Some reasons could include the myeloma drug companies are having trouble with basic math, the lymphoma and leukemia guys are much better at math than the myeloma drug companies, there is another agenda in play???(The Conspiracy Theory), or drug companies just did not have a system in place to know how much funding was going out vs. what was coming in. Seems like the most basic of math problems.   Why it takes over 6 months to correct is unconscionable and beyond comprehension!

So for all of us with myeloma, we hope they solve the last BIG BUTT, and that is to make sure the well is NEVER AGAIN EMPTY, or allow drug companies to provide copay assistance for single source and patented drugs. If we interrupt our treatment we are far more likely to die, and 30% of us already die in the first year.

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

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Dr. Carl June, The Father Of CAR T Immunotherapy! A New Last Chance For Cancer Patients? By Shweta Mishra

11/14/2017

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CAR-T cell therapy (chimeric antigen receptor T-cell therapy) has been in news since the time it got FDA approval in August 2017. In what is #newincancer and the first treatment based on gene transfer approved by the FDA, this immunotherapy treatment works by extracting a patient’s T cells, re-engineering it with some surface proteins, and then injecting the redesigned T-cells back into the body to allow them to proliferate, hunt and kill cancer cells. For now, this therapy, named Kymriah by Novartis, is approved to treat children and young adults up to age 25 with a recurrent form of the the blood cancer called acute lymphoblastic leukemia (ALL).
Dr. Carl H. June, MD, of the University of Pennsylvania, who is one of the pioneers of CAR-T cell therapy, will share all about his CAR T-Cell Journey and the Cancer Treatment Revolution with CureTalks on November 15, 2017, 1 PM EST.

Dr. June, who is a Richard W. Vague Professor in Immunotherapy, Perelman School of Medicine at the University of Pennsylvania, first wowed the science community in 2011 with promising results from a small study of three advanced chronic lymphocytic leukemia patients that was published in The New England Journal of Medicine and Science Translational Medicine. The findings, which detailed how Dr. June’s personalised immune cell therapy wiped out all signs of leukemia in two of three patients, showed the first successful gene transfer therapy to create T cells aimed at battling cancerous tumors. In addition, these findings helped put a spotlight on the big role that small human trials can play in early-stage drug research.
Dr. June was motivated to do cancer research after his wife passed away in 2001, due to ovarian cancer.

After graduating from the US Naval Academy in 1975, and serving as a naval officer before graduating from Baylor College of Medicine in 1979, Dr. June studied immunology and malaria with Dr. Paul-Henri Lambert at the World Health Organization in Switzerland. As a postdoc fellow he worked in transplantation biology with Dr. E. Donnell Thomas and Dr. John Hansen at the Fred Hutchinson Cancer Center in Seattle from 1983 to 1986, after which he joined Uniformed Services University as a professor of medicine and cell and molecular biology. He is currently a tenured professor at the University of Pennsylvania since 1999.
Dr. June, was awarded the 2017 David A. Karnofsky Memorial Award at ASCO 2017 in June, an honor bestowed for his pioneering work on CAR-T cell therapy. His Peers and Mentors say that “Carl is unique in many aspects”. Along with having won numerous awards, being a brilliant researcher, and an ultra-marathoner, he is “such a wonderful and humble person.”

RSVP to listen to Dr. Carl June live on November 15, 2017 at 1 PM EST on CureTalks to learn all about this #newincancer breakthrough treatment.

Shweta Mirshra is an author/blogger/content creator/editor, and Internet radio talk show host @curetalks #Digitalmarketing #mhealth @trialx @appinformatics #fertility #ivf #conception

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The Myeloma Cancer Community In Crisis! By Patient Advocate Cynthia Chmielewski

11/3/2017

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Recently, I received an urgent text message from one of my dear friends. “Did you hear LLS (the Leukemia and Lymphoma Society’s) Co-Pay Assistance Program is closed to multiple myeloma due to the demand? Is this true? Have you heard? I count on the LLS.” At that point I hadn’t heard anything about the fund being closed. I figured there would be some warning if this was true so I didn’t give it a second thought. I suggested she call the LLS if she was concerned. She was afraid to do this, because she feared she would hear news that she didn’t want to face. By the next day, the Internet was buzzing with this unexpected news.

It was true The Leukemia & Lymphoma Society (LLS) abruptly closed the Myeloma Co-Pay Assistance Program. The Myeloma Co-Pay Assistance Program offered financial help toward blood cancer treatment-related co-payments, private health insurance premiums and Medicare Part B, Medicare Plan D, Medicare Supplementary Health Insurance, Medicare Advantage premium, Medicaid Spend-down or co-pay obligations. This program was a godsend to many in the myeloma community. Myeloma treatment is expensive. Funding for the LLS Co-Pay Assistance Program is based on disease type. The Myeloma Fund of the Co-Pay Assistance Program awarded eligible myeloma patients up to $10,000.00 a year to help cover their treatment costs. Without this assistance many patients are unable to afford their insurance premiums or prescription and treatment co-pays. The LLS said, “… this unfortunate occurrence led to inconvenience to many of the patients we strive to serve.” The closing of this fund is more than an “inconvenience”; it is devastation to many.
What happened? It was a perfect storm. Earlier this year, two other co-pay assistance programs closed their myeloma funds. With the closure of these funds, the LLS received an influx of new applications from myeloma patients. The LLS accepted all eligible patients into their program. The LLS Myeloma Co-Pay Assistance Program was never closed to new applicants. Applicants received acceptance letters up until the day it closed.
The LLS Myeloma Co-pay Assistance Program started 8 years ago, and it is closely monitored by the Office of the Inspector General, which is part of the Department of Health and Human Services. At the time of the Myeloma Co-Pay Assistance Program’s formation, the LLS made the decision that this fund should be a pooled fund. The LLS believed that they would be able to serve more patients in this manner. In a pooled fund, the monies from the pharmaceutical companies supporting the myeloma co-pay assistance fund were put into one general myeloma account instead of individual patient accounts. When a myeloma patient requested a reimbursement, the money was taken from the general myeloma account fund. This method of disbursement of funds worked for 8 years.
Over the last decade, myeloma treatment has evolved. Treatment is more expensive than ever before. Eight years ago, monoclonal antibodies for myeloma didn’t exist and doublets (two-drug combination therapies) were more commonly prescribed than triplets (three-drug combination therapies). Eight years ago, patients weren’t living as long as they are today. Eight years ago, maintenance therapy was in its infancy. Patients weren’t treated with expensive oral therapies until progression. They stopped treatment once a maximum response was reached. Eight years ago, insurance premiums were less. Eight years ago, many patients didn’t use their entire award.
Recently, the LLS Myeloma Co-Pay Assistance Program depleted all its funds. The LLS was counting on additional funding from pharmaceutical companies to come in. As of now, it hasn’t arrived. Since funding was pooled that meant that not only was the fund closed to new applicants, but patients that were already awarded grants no longer had funding. This came as a shock to the myeloma community depending on these monies. They were in disbelief. Many had questions that were unanswered in the initial letters that they received informing them they no longer had funding available for them. The LLS published a Statement on Closure of the Myeloma Fund last week that answered many of these questions. Some questions still remain unanswered.
Patients quickly scrambled to apply for funding through other foundations, but within days those funds were closed to new applicants. Many patients have nowhere to turn. They cannot afford their prescription and insurance co-pays. They are worried and stressed. (We all know that stress is not a good thing for a cancer patient). They need to make tough decisions—do I pay for my treatment, or do I pay my mortgage? Patients with private insurance may be able to request assistance for prescription co-pays (not insurance co-pays) from the maker of their treatment. Patients on Medicare cannot get direct assistance from the pharmaceutical companies. Where should they turn to? Patients have shared their hopelessness in many of the online patient communities.
The myeloma community is in a crisis. A call to ACTION is needed. It’s not time to point fingers. It is time to work together. ALL stakeholders must come to the SAME table and brainstorm possible solutions. This needs to be done NOW! It can NOT wait. Pharmaceutical companies, advocacy foundations, research foundations, patients, caregivers, insurance companies, pharmacies, pharmacy benefit managers, medical professionals and government regulatory agencies need to work together. The system is broken. It needs to be fixed. Patients need access to treatment. What good are the latest and greatest treatments if patients cannot afford to take them?
Who’s in? My hand is raised. Is yours?
What can you do? Educate yourself, but more importantly make you voice heard. Write to your legislators about the current lack of co-pay assistance funding for the myeloma community voicing your concern that this is just the tip of the iceberg. Support legislation that will help reduce the cost of care and increase access to treatment. Contact pharmaceutical companies voicing your concern that you may be unable to afford your treatment. Share your stories with anyone who will listen. Stories are very powerful. Use social media to educate your communities. Join coalitions of like-minded advocates. Take ACTION! Together we can make a difference. There is power in numbers.

Cynthia Chmielewski
@MyelomaTeacherPatient Advocate, Patient Engagement

Andrew Schorr of Patient Power published this post first and has written an editorial on the undermining of financial access to medical care. To see this editorial, click here.

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LLS Co Pay Program For Myeloma Reopens, BUT, And It Is a BIG BUTT!

Dr. Carl June, The Father Of CAR T Immunotherapy! A New Last Chance For Cancer Patients? By Shweta Mishra

The Myeloma Cancer Community In Crisis! By Patient Advocate Cynthia Chmielewski

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