Don't Change to MPV Healthcare in Rochester, New York!!! Melanoma.. Jim Breitfeller

If you are thinking of changing Heathcare in Rochester, NY, don't. MPV Healthcare won’t process the request for CT scan of the CAP until they get the recent clinical reports and dates of the last chemo/immuno that was done. They are making us jump through hoops again. This Heathcare provider is nothing but trouble. Go with blue cross/shield if you can. You may be better off. Melanoma. I have reported them to CMS, my Congress persons,OFFICE OF THE NEW YORK STATE ATTORNEY GENERAL. Imagine,what about the old folks that don't have anyone to help them for fight for what is right. What is this world coming to???? Anything to save a buck and help the bottom line.

This really gets me fired up!!!!!!

This not the first time MPV Healthcare has denied us critical access to my Oncologist and my standard of care.

Lets keep track on how long it takes MPV Healthcare to approve the CT scan.

Take Care,

Jimmy B

Man stands up for an ideal, or acts to improve the lots of others..Melanoma..Jim Breitfeller

Robert Kennedy said, "Few will have the greatness to bend history; but each of us can work to change a small portion of events, and in the total of all those acts will be written the history of a generation...it is from numberless diverse acts of courage and belief that human history is thus shaped. Each time a man stands up for an ideal, or acts to improve the lots of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest wall of oppression and resistance."

This is a excerpt from a close friend from the Melanoma Community.

"Some of you have inquired about contacting administrators and clinical researchers both at Roche=BRAF and Bristol Myers Squib= Iplilmumab in order to have Bob get access to the clinical trials currently being done on Metastatic Melanoma. You are RIGHT ON! Indeed we must gather together and on behalf of Bob and so many more people we must contact these drug makers. Jimmy Breitfeller is a Carepage friend of ours who has beaten back his own beast of Metastatic Melanoma and has become a national advocate for those of us who are struggling with this disease. He is known as “The Melanoma Missionary” because of his daily dedication to cure of Melanoma. He has a petition that we can all sign entitled BMS COMPASSSIONATE INVESTIGATIONAL DRUG ACCESS. The electronic petition is located on his Blog

http://melanomamissionary.blogspot.com/ When you go to Jimmy's Blog you will read all his research and advocacy. This petition has taken his advocacy to a new level and it has been very effective in getting attention from the key decision makers at drug companies treating melanoma patients. It is critical for people like us to speak out and sign a petition to our government, whether it be the FDA or Congress and the Senate about the laws of Compassionate Care. Our officials need to be educated, especially when Healthcare is being debated RIGHT NOW in the Senate, and make the understand exactly what BIG PHARMA is doing correctly or NOT doing to help people who need access to medicine that might bring a cure to their diseases.

Day in and day out I read Carepages and talk to people who are at the end of their life. What I have learned from them and many of you who take the time to be updated on Bob's Journey is that we are all part of a much larger chain of life than we realize. Speaking only for myself, I have found internal happiness and joy when I have joined in the larger story, focusing less on myself and small issues and joining something wider. As you sign petitions and advocate for our loved one I think you will get a sense of what I feel on a daily basis working "the systems" to try gain access in order to find a cure for Bob's cancer. It is a kind of focus on our core purpose as a collective, which is to hand off a better world to the next generation, I find a deep sense of purpose. This is basically to say that some of the greatest joys and happiness these last 7 3/4 months has come from feeling in some small way together with Jimmy Breitfeller and many many many others we have contributed to making things better - especially for melanoma patients. What really does matter is how we treat each other.

Robert Kennedy said, "Few will have the greatness to bend history; but each of us can work to change a small portion of events, and in the total of all those acts will be written the history of a generation...it is from numberless diverse acts of courage and belief that human history is thus shaped. Each time a man stands up for an ideal, or acts to improve the lots of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest wall of oppression and resistance."

Shabbat Shalom

I am proud to be a nanoparticle in this movement. See as particles get heated up, they move faster and faster. We start to collide with other things, this inturn starts everything into motion. Energy released from this motion may be in the form of heat. Heat can be good or bad. It just depends on which side you are on.

Please Join the movement. We owe it to all Cancer Patients around the world.

Take Care,

Jimmy B

Abigail Alliance For Better Access To Developmental Drugs..Melanoma..Jim Breitfeller

Abigail Alliance For Better Access To Developmental Drugs

If you do anything this Fourth of July, Standup and Fight for what you truely believe in.

What does the Fourth of July mean to you? To me, it has a new meaning.

Independence for a Better Access To Developmental Drugs for the chronically ill.

We must make a stand!!

Please take some time out of your busy schedules and send a letter to your government.

“You Can’t Start a Fire Without a Spark!!”

Abigail Alliance For Better Access To Developmental Drugs


Legislation:The Access Act


We need you to write to you Congress Person to get this Legislation Passed

Too many Cancer patients are needlessly dying.

Please show your support.




Take Care,

Jimmy B

It is Time to Have Our Voices Heard!!! Melanoma ..Jim..Breitfeller

Please go to Melanoma Missionary and write to your congress Person.

We need to get this movement started.

Dear Congressperson,
I am writing this letter to ask for your help. As a constituent in your district, we need you to act, vote and rally for this cause. The Health Care System is failing us. The Drug (Ipilimumab (MDX-010) is a fully human, monoclonal antibody that overcomes CTLA-4-mediated T-cell suppression to enhance the immune response against tumors) has been fast tracked by the FDA has not been available for compassionate use for almost a year now. The company Bristol Meyers Squibb says they are having trouble making it. We are questioning their ethics. We believe that they are holding back and inflating the demand or does it have to do with the FDA approval process. This seems to be corporate greed at its finest.

"Unfortunately, they also have some bad habits. For example, there were two anti-trust suits filed against them, for monopolizing the market in order to delay, or stop, the generic versions of the anti-cancer drug Taxol, and the anti-anxiety drug Buspar. The company was able to do this through manipulation of loopholes in the Hatch-Waxman Act. Under this act, brand name manufacturers list un-expired patents with the FDA in a listing, or compendium, known as the ?Orange Book?. This listing offers a reward of an automatic 30-month stay against certain potential generic entrants who have been sued for product infringement."

Source:http://www.academon.com/lib/essay/bristol-myers-squibb-company.html

Right now they have the monopoly on this monoclonal Antibody.

Compassionate Use Trial for Unresectable Melanoma With Ipilimumab (IMEXA)This study has been suspended.

First Received: June 29, 2007 Last Updated: June 17, 2009 Sponsored by: Bristol-Myers SquibbInformation provided by: Bristol-Myers SquibbClinicalTrials.gov Identifier: NCT00495066

We are asking for a Congressional Investigation into this matter.

As you know 64,000 will be diagnosed with this terrible disease, and about 8400 will die this year alone in the U.S.
One in three will be touched by cancer in their lifetime, you may be the next.

Please don’t let it fall on deaf ears. Our life depends on your help.
Sincerely,

=========================================================
Here is what Bristol Meyer Squibb says about themselves:

"What sets us apart? We believe it's our commitment to patients with serious diseases, our focus on finding innovative medicines that combat those diseases, and our dedication to extending and enhancing human life."

What sets them apart is:
Corruption at the Top!!!!!

"You remember the case: Andrew Bodnar, former Senior EVP at Bristol, pleaded guilty to a single count of lying to the FTC to hide a secret deal with Canadian generics maker Apotex. Bristol had promised Apotex that it wouldn't interfere with future generic sales, provided the copycat drugmaker agreed to postpone launching its version of Plavix. The FTC objected to that deal as, in effect, a pay-for-delay agreement. Bodnar excised that provision from Bristol's agreement with Apotex--but he made an oral promise to the generics maker, the government said. Bodnar denied it; he was charged with the crime."

Source:http://www.fiercepharma.com/story/ex-bms-exec-sentenced-write-plavix-book/2009-06-09


Take Care,

Jimmy B

Don't tell it to me, tell it to the Marines!!!!..Melanoma..Jim Breitfeller

This moring I was emailed by a fellow patient that is having trouble with the medical finances. Who wouldn't. Anyway, I suggested this.


"May I suggest you write to your congress people and the Attorney General for your state and Medicare. Give them all your information ant tell them you are being discriminated against because you are a cancer patient,. I don’t believe that they Insurance can do that. You need to find a patient advocate in your area."

Then I got a reply, How do you get a patient Advocate? Then it hit me. I didn't give out any tools to do so. So now, on the Melanoma web blog there is help. If you need it, It is there.

Source:http://www.patientadvocate.org/

I tried it out and it is easy. Check this out!!!

I wrote to my congressmen.

As a constituent concerned about patient access to life-saving treatments, I am writing to ask that you support the Access to Cancer Clinical Trials Act of 2007� (HR 2676) sponsored by Congresswoman Deborah Pryce. This legislation is vital for cancer patients throughout the country that struggle to receive treatment and/or struggle to meet their financial responsibility.

I am well aware that for many patients, clinical trials are not even an option if they are faced with a cancer diagnosis because their insurance refuses to pay for the treatment. For others, the burden of mounting co-pays for healthcare services related to their participation in a clinical trial determines their inability to participate. I feel very strongly that an individual with a cancer diagnosis should focus on their treatment and quality of life, not on coverage of services and escalating debt.

There are 10 million Americans living with cancer and another 1.5 million more who will be diagnosed with cancer this year. As the opportunities to enroll in clinical trials decrease due to funding cuts, coverage for participation in clinical trials and coverage for routine costs associated with clinical trials is necessary in order to make scientific advances. In order to promote innovation, we need to do everything we can to encourage individuals to enroll in clinical trials and HR 2676 provides an opportunity for many patients to enroll in clinical trials that could save their lives. I support the principle that providing coverage and reimbursement for services are essential for developing new treatments for cancer and I hope you will support this legislation and patient�s access to life-saving treatments.


“There are three parts of the equation in a clinical trial. There’s who has control, who gets the reward, and who takes the risk. Patients take all the risk, they have no control, and they get no reward. Patients ought to be the ones driving the process and get the reward out of it and have the control, since they are the ones that take the risk.” Greg Simons



So Now we have a Voice!!!!!

Take Care,

Jimmy B

A letter to my Congressman. Melanoma .. Jim Breitfeller

I hope to make contact with my Congressman tonight.

Here is a copy of that letter:

Congressman Dan Maffei,

I have a story to tell.

Last July (2005) I was riding my bicycle to work at the Eastman Kodak Research Labs about 3 miles from home; I was wearing a knapsack to carry my things to and from the labs. I started noticing an ache on my back. So I decide to go to the dermatologist. To make the log story short, it was cancer. Melanoma.

Over 64000 a year are diagnosed with Melanoma and 8500 will die this year alone. There is no cure for this type of cancer and if you progress to a stage IV were it has metastized, you usually have 6 to 9 months to live.

Anyway, I had to go out of state to get the specialized treatment. In doing so, I did four clinical trials to try to save my life. The last two were immunology therapy. One was anti-CTLA-4 blockage (Monoclonal antibodies) and the other was high dose Interluekin-2 (IL-2). These combinations of therapy just so happen to jump start my immune system. At the time of the therapies I had 40+ tumors in my Lungs.
Today 26 months, I am (NED) no evidence of disease.

So being a researcher by profession at Eastman Kodak for 25 years (I hold a couple of patents that I helped coauthored), I began to research and piece together why my treatment has worked. I have contacted Dr. Steven a Rosenberg and other colleagues to review my Theory.

Here are just some of the responses from the Clinical Oncologists:

“Fine theory but just theory that has never been tested in relevant clinical setting…”

“May I forward this to one of my colleagues? He may have some insights.”

“Thanks for your note. You really refreshed my mind! I am glad things have worked out relatively well for you!. Did you get rid of your disease? I am glad you are writing your story and hopefully inspiring a number of patients in dire need of hope. Let me know how can I help.”

“Thank you so much for sharing your experience and thoughts.
Some patients have indeed experienced tantalizing responses after treatment with CTLA4 antibodies. Let me assure you that many of us in the field keep working hard on figuring out what explains those successes so that, armed with that knowledge, we can extend the benefit to many cancer patients. Experts agree that the way forward requires combinations of immunotherapies. Despite the many obstacles (scientific, regulatory, operational, intellectual property, economic, etc), Pfizer Oncology is moving decisively in that direction.”



“Congratulations,
I think you may find our ASCO abstracts interesting this year. Especially the one that talks about the time dependent variability of immunoreactivity in patients with melanoma.”

(ASCO) is the American Society of Clinical Oncology. The meeting this will be held on May 31-June 2, 2009 in Florida.

As you can see, I am trying to get the word out and hopefully gain some traction. I have tried to contact the two drug companies because this treatment/ theory involves their two drugs and they must be used in concert together to obtain a synergic immune response.

Dr. Rosenberg and colleagues did a trial at the NCI but the dosage and the timing of each of the drugs were not done at optimal conditions at the time. Based on my theory and other researchers now know that there is a “time dependent variability of immunoreactivity in patients with melanoma” and that a higher dose is needed to obtain a immune response.

“I don’t think we can draw any conclusions yet based on your experience with a single dose. However, one thing we do know is that dose does matter. Last year at ASCO, we presented data showing that higher doses of ipilimumab (10 mg/kg) were better than 3 mg/kg or 0.3 mg/kg. I once again applaud you for your efforts to understand the excellent response which you have had.”

As you can see, I am passionate in finding a cure/stabilization. I have come to you as my representative, to ask for your assistance to help further this cause because I believe this will benefit the Nation as a whole and even the world as it pertains to today. We need to get this Drug FDA approved as soon as possible.

We can stand up to cancer and Move Mountains if we all work together!!!!!!!!!!


Thank you for your time and I hope to hear from you soon.

Please don’t let this fall on deaf ears. I will volunteer to help move this forward. We owe it to the 65000+ patients in Our Country and the world.


Sincerely,



James M. Breitfeller ( Patient/Survivor/Researcher of Melanoma Stage IV)