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A Tsunami Of Change Is Descending On Myeloma and Cancer - What Is ICER, Medicare Part B Changes, And Monopoly Drug Pricing

4/27/2016

Mark your calendar for May 19th. Unless you have been living under a rock, you can not help but hear about how some companies have acted irresponsibly and raised drug prices by 5000 percent. Many cancer drugs cost upwards of $100,000 per year and more, and continue to increase at outrageous rates. Our government has discussed this but has done nothing to bring these monopolistic pricing practices into check, so Medicare and private insurance companies have looked to reign in these run away drug prices. Medicare has proposed major changes to Medicare Part B in an attempt to slow the explosion in health care expenditures. Today, Medicare Part B generally pays physicians and hospital outpatient departments the average sales price of a drug, plus a 6 percent add-on. The proposed model would test whether changing the add-on payment to 2.5 percent plus a flat fee payment of $16.80 per drug per day changes prescribing incentives and leads to improved quality and value. Most of all it would promote the use of cheaper drugs.

Others would like to have the insurance companies take on the doctors treatment decision process and deny coverage based on a FORMULA. An independent (funded in large part by insurance companies) ICER (Institute for Clinical and Economic Review) following in footsteps of NICE (the UK's National Institute for Health and Care Excellence) has looked to develop a formula which will value a year of life at between $50,000 to $100,000. In addition, they use a gauge of life which devalues a year of a patient's life to a fraction of a year the sicker the patient is. They actually go negative for someone who is bedridden and can not care for themselves.

This is a very complex subject, and luckily Dr. Rajkumar of Mayo Clinic, a respected and world renowned myeloma specialist, has been kind enough to be part of a Cure Talks broadcast to help to educate the doctors, patients, and the general public on what these programs are and how they might affect the doctor patient relationship. I can tell you that there has been a tidal wave of criticism of the ICER program. One view of the program comes from Dr. Durie, the head of the International Myeloma Foundation. You can read his evaluation of the ICER program if you CLICK HERE.

The Cure Talks broadcast will be on May 19th at 6:00PM EST. I will provide the details of the program in a later post.

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Is Screening Myeloma's New Frontier? - The Entire Country Of Iceland Will Screen For Myeloma And Could Double Their Myeloma Life Expectancy

4/21/2016

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It has taken myeloma almost 30 years to double life expectancy from 2 years to 4 years, but what if you could double it to 10 years from the current 5 years by doing one thing? In 2014, Dr. Gareth Morgan of UAMS stated, "On the subject of awareness and delayed diagnosis, I believe the fact that it takes 3 to 6 months and more often 6 months from first symptoms to diagnosis, is a bit of a scandal.   To make real inroads into improved myeloma survival we need to get it diagnosed early before we have organ involvement." In 2015 Dr. Irene Ghobrial of Dana Farber outlined a game plan to achieve this goal. She stated, "Multiple Myeloma is the only cancer where we wait for it to metastasize and show organ, bone damage, or anemia before we begin treatment."

She and many other specialists are coming to the conclusion that screening, early diagnosis, and early treatment is the future of myeloma treatment. There are a number of steps that must be taken to reach this goal. Those steps are as follows:

Step 1 - We need to determine which MGUS and smoldering patients will progress to active myeloma and are candidates for early treatment. Genetic testing may be the key to this step. For example just 10% of smoldering patients will progress to full blown myeloma, whereas 50% of high risk smoldering patients will progress. In MGUS only 1% of patients will progress, but some may have a genetic profile which indicates a higher likelihood of progression.

Step 2 - We need to prove early treatment will result in improved Overall Survival. A trial by Dr. San Miguel of the Spanish group was conducted for high risk smoldering myeloma.

Step 3 - We have simple blood tests for the measurement of M protein and a more sophisticated test called the light chain test. Both of these tests together cost less than a mammogram or colonoscopy. However, these tests are not conducted during a normal physical and blood panel. Dana Farber will be establishing a clinical trial to conduct screening on a large scale to determine if screening, genetic testing, and early treatment can be a game changer like it has with breast and colon cancer.

All of the steps have now been completed, or are in motion. The last step is being implemented in Iceland by Professor Sigurdur Kristinsson of the University of Iceland, in his pivotal MGUS screening study for the forthcoming iStopMM (Iceland Screens, Treats or Prevents Multiple Myeloma) trial. The study will examine blood samples from approximately 140,000 adults over age 40 in Iceland for the earliest signs of myeloma. A cancer of the blood plasma cells that affects approximately 90,000 in the US, and more than 200,000 around the world, myeloma can go undiagnosed until the disease begins to seriously damage health. To read an IMF article which explains the project CLICK HERE.

Why then if implemented will this double myeloma life expectancy? We can assume if this is an ongoing program, as people turn 40 they are also tested, few patients will ever go undetected as they often do now. When you have end organ damage you are already at ISS stage 2 or 3.   Most everybody if tested will be found in the MGUS, Smoldering, or in ISS stage1. Why is this important? If you are found in stage 1 your life expectancy is twice that of a stage 3 patient. Because of delayed diagnosis the UK has noted that 20% of patients die within the first 2 months of diagnosis, and the National Cancer Institutes SEER data base shows 30% of patients die in the first 2 years. So how would one estimate what life expectancy would be under the new program. Because we do not know with certainly the outcome of the trial, we can only make estimates based on assumptions.

One assumption might be that there will be far fewer of the 20% who die in the first 2 months. Lets say that goes to 5% which would bring the 2 year deaths to 15% from 30%. If you do the math this represents a 10 year life expectancy or 50% survival rate at 10 years.

Another assumption might be the death rate in first 2 years will be more like the third year is now. That is 6.8% and the two year rate of 13.6%. Or the life expectancy is a little over 10 years.

Or the best case, like in breast cancer, if found in the early stage like DCIS, 5 year survival is 100%, and if this is the case with myeloma, well then the sky is the limit. We all die from something else, like old age, but without ever having end organ damage. Now that would be a Myeloma Miracle!

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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Multiple Myeloma Survival Finally Improved To 5 Years! Yeah!!! And In Two More Years It Will Reach 6 Years, BUT

4/17/2016

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If you are a myeloma patient, you have to love this news. When I was diagnosed there was little data available, but I do remember a Mayo publication which said the average life expectancy was 33 months and had not changed in a decade. The new patients can now look at the new data represented in the graph below, and it looks as though the sky is the limit for survival. And if you are lucky enough to make it through the first 2 years after diagnosis, the sky IS the limit. We unfortunately still lose 30% of patients in the first 2 years, and this has not changed much in the last 10 years. This has everything to do with late diagnosis, inadequate treatment for the newly diagnosed patients. I will leave further discussion on this subject to another post. But now let us celebrate some outstanding news. For the new SEER data published on 4/15/16 CLICK HERE.

On a blog post last year I predicted this would be the year life expectancy reached 5 years, and you can view my prior prediction if you CLICK HERE. My new prediction is that in two more years life expectancy will increase by another year to 6 years.

Below is a look at the history of the survival for myeloma in the USA and my prediction.

year                          survival milestones        years between milestones

1975              2 years                               -

1998                        3 years                             23

2004                        4 years                               6

2008         5 years                             4

2010 (prediction)       6 years                             2

As you can note in the graph and list above, the pace of change has increased significantly to where we are improving life expectancy by one year, in just two years. Whereas, it took 23 years to improve survival by just one year in 1975. And if you have not noticed, the drastic increase in the rate of improvement started in the early 2000's which coincides with the development of IMID,s (Thalamid, Revlimid) and the PI (Velcade).

With 4 new drugs approved for myeloma in 2015, and two of them representing a new class of drugs (checkpoint inhibitor and monoclonal antibody), we can expect continued improvement for the patients who are fortunate enough to be diagnosed in a timely fashion. The 30% who do not make it 2 years will not share in this because of late diagnosis, wrong diagnosis, and poor first line treatment. More on this subject later.

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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Necessity Is The MOTHER of Invention! A Key To The "Myeloma Miracle!"

4/11/2016

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Susie Novis

First, what is the myeloma miracle? It is the outstanding drug development, which we had last year, and the continuous improvement achieved in survival and quality of life with each new development. We do have some of the best and most dedicated researchers and myeloma specialists in the world. How did this come about? I believe the myeloma advances have had three major components which are the centerpiece of the recent outstanding progress in survival and drug development. These components, like the three legs of a stool are as follows.

Component 1 - The founding of the IMF and its development. The International Myeloma Society has provided a place for patients to obtain information on myeloma, including IMF support groups. In addition it provides a forum for doctors to share ideas, develop strategy, coordinate clinical trials, and the dissemination of their findings. The doctors who joined in on these programs have became the de facto myeloma specialists.. There is no degree called myeloma specialist, however, those who participated in the IMF efforts have become the closest thing to one.

This became a necessity for Susie Novis, who with Brian Novis and Dr. Durie, founded the IMF. From the IMF web site Susie wrote the following.

Shortly after she and Brian Novis were engaged, he was diagnosed with myeloma. Brian received his diagnosis over the phone. His doctor called him at work and said, "You have multiple myeloma." Brian said, "What's that?" The doctor replied, "It's a cancer of the bone marrow, you have 3 to 5 years to live, stop by my office on your way home." He was just 33 years old.

Like everyone who hears the words multiple myeloma for the first time, they were in shock and, worst of all, they felt completely alone. At the time, there was no place for myeloma patients and their families to turn for help or support. Susie remembers that when she should have been picking out china and a wedding dress, she was searching for medical information for her fiancé. "We wanted to help prevent future myeloma patients and their families from experiencing the same sense of isolation we had to struggle with." Susie Novis

In four short years Brian Novis died at 37 years old, and it would have been so easy to just put this tragic chapter of Susie's life in the rear view mirror. But no, she would selflessly carry on to honor her husband's memory. I have seen a number of caregivers who have done the same thing, and their example is just wondrous and awe inspiring. At this years Pat's Survival School, we had several caregivers whose loved one had lost the battle that were represented there, and who were giving back. Anne Pacowta, and Dianna Chiles, both IMF leaders, Pattie Killingsworth, Pat Killingsworth's wife continued the Survival School after Pat's recent death, and Kimberly Alexander, whose NFL football husband died several years ago. These women are truly remarkable for their selfless service. If I could be that strong?

Kathy Giusti

Component 2 - The founding of the MMRF in 1998, or the Multiple Myeloma Research Foundation. The MMRF has been integral in creating a business model which helped priorities research, and most of all developed a fund raising mechanism required to support this research. The NCI has funds for research but hands it out based on their own formula which has provided just $45 million for myeloma research, and with the cost of new drug development estimated to be in the 1 to 2 billion dollar range, you can see the basic math is against us. In 2014 the MMRF had been able to raise over $27 million, and they partnered with the drug companies and research community to bring new drugs to market. This has been instrumental in the 4 new drugs approved for the treatment of myeloma in 2015, Myeloma represents 1% of all cancers and yet has produced 33% of all new cancer drugs. Again taking information from the MMRF web site they write the following.

The Multiple Myeloma Research Foundation (MMRF) was founded in 1998 by identical twin sisters Kathy Giusti and Karen Andrews soon after Kathy was diagnosed with multiple myeloma. With limited research funding, no effective treatments, and few clinical trials in the pipeline, the life expectancy of the rare and fatal cancer was just three years.

From its inception, the MMRF has been uniquely focused on building collaborative research models to quicken the pace of scientific inquiry and get patients the lifesaving treatments they desperately needed. It is widely recognized as having transformed the treatment landscape for multiple myeloma patients, dramatically extending patients’ survival. It now stands as a new paradigm for other research groups seeking to catalyze progress in other cancers and rare diseases.

The obvious necessity was to find a way to improve on this dismal prognosis. She continues to be dedicated to this effort even though she had an allogeneic matching donor transplant in 2006, which has been durable.

Jenny Ahlstrom

Component 3 - This one just may be a little premature for some people, but the focus on high risk disease which is being highlighted by Myeloma Crowd, may just be as important or more important than any of them. Great progress has been achieved in low risk disease, but little to no progress has been achieved in high risk disease. It is my understanding that myeloma will one day morph into high risk disease for most, if not all myeloma patients who have not achieved cure. It is for this reason I believe the MCRI, or Myeloma Crowd Research Initiative, which focuses on high risk disease, is so very important. If we can cure high risk disease, we can cure all myeloma! Jenny Ahlstom, a young mother of six children, with high risk features could not accept the current two year estimate of life expectancy and started the Myeloma Crowd website. From the website they state:

The Myeloma Crowd is a patient-driven initiative to help educate and support multiple myeloma patients. The goal is to simplify complex information and arm patients with important and current information about myeloma in order to help them obtain optimal outcomes.

The Myeloma Crowd and CrowdCare Foundation were created by myeloma patient Jenny Ahlstrom. The Myeloma Crowd now features a wealth of content contributed by other myeloma survivors.

The MCRI assembled a world class myeloma specialist panel who identified the two most likely high risk myeloma projects to pursue. Both projects are immunotherapy projects, so unlike a drug, they do not fit into a pharmaceutical company's portfolio. They are a process like SCT(stem cell transplant), which benefits the hospital more than the drug companies. However, it will still require a lot of money to get through the clinical trial process, and as a result the MCRI is trying to fill this shortfall with crowd funding. I do believe drug companies who can think outside the box, a wealthy benefactor, or capital fund can see the profit they can achieve from owning a piece of patent for the process, which will result in the myeloma cure.

As you may have noticed, the title gave a hint to the fact what we have a group that is heavily weighted to the outstanding women of the myeloma patient and advocate community. I am just so glad they have all shown the initiative to be part of the solution, and create a template for which other cancers might follow. You go "GIRLS"!

And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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Pat's Myeloma Survival School, What An Amazing Weekend. Part Of The Myeloma Miracle.

4/4/2016

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What a marvelous program and outstanding success. Where else will you find a patient centered cancer program which brings together patients, caregivers, patient advocates, myeloma specialists and their support staff, myeloma researchers, nurses and nurse practitioners, nutritionists, pharma partners, genetic testing companies, authors, long term survivors, The International Myeloma Foundation, Multiple Myeloma Research Foundation, Myeloma Crowd Research Initiative, et al. Pat did this, and Pat's wife Pattie, Michele, and Dave, with the help of so many others, made sure this patient centered idea did not die when Pat passed away so unexpectedly and suddenly just over a month ago. Pattie was determined to institutionalize this outstanding program as a legacy for Pat, but most of all to continue the selfless efforts which Pat had always provided the myeloma patient community. I think Pat was remarkable in bringing all of these resources into one place for the benefit of patients, however I also think it is an example of what I am coming to believe is the Myeloma Miracle. What is the Myeloma Miracle? I think it is the synergistic cooperative effort which exists between patients, advocates, doctors, researchers, IMF, MMRF, MCRI, and our Pharmaceutical partners, You can see this all come together at Pat's Myeloma Survival School. It is also the reason myeloma, a cancer which represents 1% of all cancers, can have over 33% of all cancer drugs approved in 2014 were for the treatment of myeloma.

This effort would never be possible without our many generous sponsors who helped to make this affordable to the myeloma patients. The entry fee was just $60 per participant, but my best guess of the cost without the help of our sponsors subsidizing this program to be more on the order of between $500 to $700 per participant. Thank you to our sponsors and our pharma partners who give back to the patient community. We have many new drugs approved or nearing approval for myeloma, so I can expect additional participation from the newer members of Myeloma Pharma. Our myeloma pharmaceutical partners have shown what world class patient centered advocacy programs can achieve. I have come to understand how important it is to have pharmaceutical companies who see us as partners and not merely profit!

Three years ago Pat Killingsworth started this as Pat's Beach Party, and as he would always say "Feel Good and Keep Smiling," and he wanted the event to be educational and fun. Even though this years program included a memorial to Pat on Saturday night, it was really a celebration of Pat's life and his unwavering contribution and relentless dedication to the myeloma patient community. In addition to a program to help patients become their own best advocates and to educate themselves, Pat also wanted those that attended to hit the beach and enjoy what Fernadina Beach had to offer. It included a walk for Muscles For Myeloma and a silent auction which raised money for the Myeloma Crowd Research Initiative both of which Pat felt was the potential cure for myeloma. If you cure high risk myeloma, you will cure all myeloma. I share this wish. The Myeloma Crowd Research Initiative is a program to fund the two most likely clinical trials to cure myeloma. Nearly $200,000 has been raised to date, with a goal of $500,000 to totally fund this research. Also at the end of the program, the number one question was, "Will This Wonderful Survival School Be Available Next Year?" Pattie hopes to continue this Survival School as a legacy to Pat and an ongoing resource for the myeloma patient community. I will help to make this happen in any way I can. For those who attended, please use the comment section to let the program team know what your thoughts of the program were, and if it should live on for those who could benefit from this resource in the future. I am including some pictures of the event.

Pat would have been very happy to know Pattie did such a remarkable job with the help of Michele and Dave. And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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A Tsunami Of Change Is Descending On Myeloma and Cancer - What Is ICER, Medicare Part B Changes, And Monopoly Drug Pricing

Is Screening Myeloma's New Frontier? - The Entire Country Of Iceland Will Screen For Myeloma And Could Double Their Myeloma Life Expectancy

Multiple Myeloma Survival Finally Improved To 5 Years! Yeah!!! And In Two More Years It Will Reach 6 Years, BUT

Necessity Is The MOTHER of Invention! A Key To The "Myeloma Miracle!"

Pat's Myeloma Survival School, What An Amazing Weekend. Part Of The Myeloma Miracle.

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