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Katherine Keys, An Orphan Disease (#Mesothelioma) Success Story! The Keys To Her Survival

4/23/2017

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A Ten-Year Mesothelioma Survivor Shares Her Story
 
A diagnosis of mesothelioma is terrible news, but when Katherine got her diagnosis, she was not prepared to let it defeat her. At the age of 49, thinking she only had the flu, Katherine Keys found out she had a devastating type of cancer and was given a hopeful prognosis of two years to live. Ten years later, she is glad she never gave in to despair and that she fought to survive this disease.
 
Mesothelioma: An Insidious Cancer

Katherine was diagnosed with pleural mesothelioma, a type of cancer that affects the pleura, the tissue that lines the lungs and chest cavity. It is often mistaken for lung cancer, but is distinct and is most often associated with having been exposed to asbestos. Mesothelioma is aggressive and spreads quickly. It is considered incurable, and most people diagnosed receive a life expectancy estimation measured in months, not years.
 
For Katherine, her story began with symptoms that seemed just like more ordinary respiratory illnesses. She had some shortness of breath, a bad cough, and difficulty breathing. As the symptoms got worse, she ended up in the emergency room where she finally got an accurate diagnosis of cancer. Mesothelioma is so insidious because it mimics other illnesses. Because this kind of cancer is rare, many people will be misdiagnosed several times before getting the right diagnosis, all while the cancer grows and spreads.
 
Stage I Mesothelioma and Aggressive Treatment

Katherine was luckier than most mesothelioma patients. Ending up in the ER may just have saved her life. Because mesothelioma looks a lot like other diseases, most diagnoses are late, in the third or fourth stage. Katherine got her diagnosis during stage I, which meant she had a fighting chance. The cancer had not yet spread very far and aggressive treatments just might eliminate her tumors entirely.
 
Even at stage I, the prognosis was not good and her doctors did not expect her to survive more than two years. Katherine decided to be positive and to choose the riskiest and most painful treatment path: radical surgery followed by radiation therapy.
 
Katherine was referred to experts at the M.D. Anderson Cancer Center where she underwent a surgical procedure called an extrapleural pneumonectomy, which involved removing her pleura, some lymph nodes, part of her diaphragm, and an entire lung. Recovery from this surgery was long and slow and she also had to undergo radiation to kill any remaining cancer cells. The surgery itself could have killed her, but it gave Katherine her only real chance of surviving mesothelioma.
 
Recovery and Remission
As Katherine recovered from surgery and went through radiation, her doctors screened her for cancer every month. If it was coming back, they needed to know so they could administer more treatments. Month after month, they could find no signs of cancer in her body. After six months, there were still no detectable cancer cells. After a year, with no signs of cancer, Katherine’s doctors declared her to be in remission, something so few people with mesothelioma achieve.
 
As you could expect, all of these treatments come with a cost. Katherine decided to look for financial help on the internet to help her pay for her overbearing medical costs. The she came across MesotheliomaLawyerCenter.org where she learned about trusts that the government has set up for people suffering from asbestos related cancers. These same trusts helped her afford her medical bills. Without them she would have been lost. It has relieved much of the burden on both herself and family members, as you would expect.
 

Katherine now lives life limited because of her surgery, but happy to be alive and thrilled to have more time with her family and friends. She can’t do everything she once could, but she was also told she would not live more than a couple of years. She is now ten years past her diagnosis and is loving life more than ever. She is also enjoying sharing her story, inspiring others to fight cancer and to hold on to hope.

 
So what can we learn from Katherine's story, and what were the keys to her success.  Why did she beat the average one year survival of just 40%, or 9 to 10 months.  

Her first and probably most important step was she knew when something was wrong and refused to stop in the pursuit of what was wrong until she found the cause.  As a result she found it in an early stage, and with cancer the earlier it is found the longer the like expectancy.  

She became her own best advocate and researched and found the best cource of treatment which although intense gave her the best possibility of an improved life expectancy.

She went to one of the best cancer centers in the world for mesothelioma cancer treatment,  MD Anderson.

She was able to go to a top notch hospital because she sought out places for financial help to minimize compromises on treatment due to financial hardship. 

If you look at much of what I have written on this site it follows the same basic keys to success.  I would argue, these keys will hold true for most orphan cancers, and most all cancers which have metastasized. 


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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PAN Is Still Out Of CoPay Funds, But The IMF And PAN Indicate Other Organizations like LLS have Available Funds -  Why The Problem?

4/19/2017

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First the GOOD NEWS, then like Paul Harvey used to say ," THE REST OF THE STORY!"

PAN posts on their site the following:

Program Status - Fully Allocated

We are no longer accepting or processing applications for new or renewal patients.
The PAN Foundation’s Multiple Myeloma fund is currently fully allocated. As of April 19, 2017, Leukemia and Lymphoma Society, Healthwell and Patient Advocate Foundation are accepting applications.

The IMF posted the following update:


  • APRIL 10, 2017 - CO-PAY ASSISTANCE PROGRAMS UPDATE (4/10/17)  

The following co-pay assistance foundations are now open to myeloma patients who receive drug coverage through Medicare and who meet eligibility requirements:

As of 4/10/17
Healthwell Foundation
tel:  800-675-8416
website:  healthwellfoundation.org
LLS Co-Pay Assistance Program
tel:  877-557-2672
website:  lls.org
Patient Advocate Foundation
tel:  800-532-5274 
website:  http://www.patientadvocate.org

up to $10,000



The rest of the story is PAN, the largest of the copay programs, so if they are out of funds it hurts a lot of people, and the vast majority of the funding comes from drug companies.  The economics for the drug companies is if they do not provide the copay of typically 20% of the drug costs, the patient will not buy the drugs and they will lose the 80% they get from Medicare or private insurance.  So apparently somebody at drug companies have to hone up on their basic math skills.  I have said before if they do not provide copay assistance,  patients can't pay the copay and big pharma looses the 80% and unfortunately we may lose our LIVES. Please get a new calculator because if no copay no 80%, and you just may lose your customer base.   A great article about how the current system has developed into what we have today titled "How Big Pharma Uses Charity Programs to Cover for Drug Price Hikes - A billion-dollar system in which charitable giving is profitable" CLICK HERE. So now you know the REST OF THE STORY, but it comes with a big BUT.  But unless co pays go away, we must have the help from the Jerry Rigged system we have now.  

So in Summary:

Cancer Bad, Drugs Good, High Drug Costs Bad, Unaffordable Insurance Co-pays Bad, Co-pay assistance Good, Drug company funding for co-pay Good, Under funding copay by drug companies Bad and maybe Stupid!
 

Good luck and may God Bless your myeloma 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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Can You Hear It Now? The Jerry-rigged #Myeloma Safety Net Is Getting Shredded!

4/1/2017

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I recently received an email from the IMF with news I felt to be quite startling.  Here we are at the end of March, just 1/4 of the way through 2017 and the Co-Pay Assistance Funds had dried up. The letter from Susie Novis, the CEO of the International Myeloma Foundation, is attached.  First let me explain how I believe the Myeloma Safety Net used to work.  

The Inner Workings of the existing system

Drugs for cancer treatment can cost $150,000 to $500,000 per year

Insurance Companies do not want to pay for the total cost of the drugs so they ask for co-pays of 15 to 50% and more

Most Cancer Patients are over 65 years of age and on Medicare and, according to a 2014 Forbes article, married couples over age 65 have a median yearly income of $44,718. Forbes reports that individuals 65 and older have a median annual income of $25,757. The calculation includes all sources of income, including government assistance, disability, Social Security, pensions, IRAs or 401(k) plans.

A 20 % co-pay could be $30,000 to $100,000/year

Drug companies know 99% of patients will not be able to buy the drugs or take them without help so they have historically provided the copay funds so they can sell their drugs.  And my opinion is that I believe that drug companies set prices to account for the 20% they will give to the patient.  Not all funds come from the drug companies but a large amount does. 

What has gone wrong? Outflows first.

Let's just follow the money and think of what could be causing the increased outflow?

​Patients may be living longer and that would be a great thing.  Longer lives, more drugs to extend lives

More drugs are available from more companies, so the cost could be more for the new drugs?

Maintenance has become part of the standard of care, so more cost for a longer time?

Now 3 and 4 drug combos being used instead of 1 and 2,  which will drive up the cost?

Insurance co pays and deductible have gone up, but they have not exploded in one year?


Now let's look at Inflows.

Takeda and Celegene have always done their part and have been excellent partners, but have they increased their participation in step with the rising outflows? 

Light the Night, MMRF, and other fundraising efforts are just not enough to make a dent in the shortfall

We know based on the current federal budget moves that no added funding is going to come from them.  They just slashed the NIH funding!

There are now a lot of new players coming into the myeloma space, J & J, Novartis, Sanofi, Bristol Myers Squibb, Abbvie, and have they stepped up to the plate like our tried and true long term partners have.  I know we will be spending billions on their drugs, will they be smart enough to know we can not do it without their financial help.   The current system is a Pay to Play system.  

I am asking the questions because I see the future without a change in the inflow of funding and the future is bleak. This Is truly Scary because without drugs WE DIE.  So the drug companies can step up to the plate or watch the system go nuclear as  myeloma and all cancer patients start to drop like flies.  The government will take action when they see their constituents are at the gates.
 CAN YOU HEAR US NOW?


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















Dear Gary,

Thank you for registering for "FREE Webinar to Address Concerns Regarding the Recent Lack of Funds for Co-Pay Assistance".
Dear Friends, 

Over the past few weeks, the International Myeloma Foundation’s InfoLine has been flooded with calls from patients and caregivers facing insurmountable financial challenges due to the high cost of drugs and increases in insurance copays. In the past, several services have been available to provide financial assistance to patients; but the current atmosphere has severely limited the availability of those funds. 

In fact, currently there are NO funds available for co-pay assistance, and the expected funding that will soon be available will likely dry up very quickly. 

On Thursday, March 30, 2017 at 4pm Pacific / 7pm Eastern, the IMF will host a FREE teleconference open to cancer patients and caregivers to address these issues. We do not have solutions yet, but, we do know that the first step in addressing a problem of this magnitude is to make sure that companies are aware of the impact it has on patients and their families. This forum is for you to share your stories, and your voices will be heard. 

To register for this teleconference, please fill in the forms below. We urge you to participate and please share this information with others who might benefit from the opportunity to understand the source of the issue, and listen to stories from families across the country who face similar challenges. 

This call will be recorded. It is our hope that we will be able to share excerpts of your stories with people in positions to make things better for cancer patients everywhere. 

Warmest regards, as always we’re here for you! 

Susie Novis Durie 
President and CEO 
International Myeloma Foundation 
Please send your questions, comments and feedback to: [email protected]


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    Author

    Gary R. Petersen
    [email protected]
    CLICK HERE for my myeloma journey

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