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February 4, 2020 — THANK YOU for the outstanding job you did in 2019! Collectively you achieved a major goal that the Tennessee Cancer Patient Coalition (TCPC) has pursued for the past five years. Today about a half-million more Tennesseans have proton therapy insurance coverage as a result of The Proton Therapy Access Act being approved by the State Legislature almost unanimously and signed into law by Governor Bill Lee.

This achievement represents a significant step toward gaining access to this world-class cancer treatment for everyone. Together we defeated the argument made by opponents that proton therapy is too new, investigational and experimental. YOU made a huge difference with your influence!

As a result of your support on a federal level, you are helping future cancer patients have access to proton therapy!  I have some terrific news to share with you. As a result of everyone’s efforts, insurance companies have become more open to providing proton therapy coverage for their policyholders. Turn back the calendar five years ago when we started this effort, and you can see the increased number of cancer patients who have been treated (and covered) by proton therapy!

As a result of our progress, we do not plan to introduce another bill in the Tennessee Legislature in 2020. We have achieved a cooperation level with insurance companies that hasn’t existed in previous years as more studies and compelling evidence and treatment plan comparisons impact an increase in coverage. 

Another fact that you may not know is that the TCPC has assisted other states in their efforts, as three copied our previous bills. In this connection, I’m pleased to inform you that Oregonians now have proton therapy insurance coverage! We are making a difference on a national level.

This year we’ll focus on a much larger stage than just our own state. Currently the proton therapy centers across our country are closely following a proposed new regulation by the Centers for Medicare and Medicaid Services (CMMS) known as the Radiation Oncology Alternative Payment Model (ROAPM). The proposed ruling has no current impact on our proton centers in Tennessee, who are continuing to treat many patients from Tennessee and the region! 

Right now, the cooperative efforts of the National Association for Proton Therapy, individual proton centers from across the country, and other organizations including the TCPC, have successfully educated our government leaders to have a better understand of proton therapy.  We have met with them in their state offices, hosted tours for them at the proton centers and visited their offices in DC.  As more and more proton centers open in the nation, proton therapy becomes more accessible to more people, and we will always support the position of Patient Choice and their right to have access to proton therapy.  There are currently 35 operating centers in the US today!   

The TCPC called upon you a few weeks ago to bombard your U.S. Senators and U. S Representative to stop this regulation. YOUR responses proved remarkable, as we blew away all other states in the number of responses. Tennesseans demonstrated why Tennessee is known as the Volunteer State. I’d be amiss by not acknowledging those of you living in other states who stepped up, too! To everyone who contributed to this successful effort, THANK YOU!

In closing, I urge you to keep up with the TCPC’s website, www.tncancerpatient.org, and also its Facebook page, Tennessee Cancer Patient Coalition. These two resources will inform and educate you about what’s going on in the regulatory arena. We will likely be calling on you again to help out, and I’m confident that you’ll step up again to do so. I look forward to the day when all parties work together to defeat cancer. It’s a noble cause.

Don Denton
President
TN Cancer Patient Coalition

On July 16th, Medicare or CMS (Centers for Medicare and Medicaid Services) proposed a major change to their coverage for proton therapy called the Radiation Oncology Alternative Payment Model or RO APM. This proposed ruling would include proton therapy to be reimbursed at the same rate as other radiation therapies without regard to cost and resource differentials. This change could result in a negative impact by restricting patient access to proton therapy.

• Proton centers will be challenged to serve patients under the RO APM.
• The RO APM would restrict and jeopardize Medicare beneficiaries’ access to proton therapy.
• The RO APM would threaten access to proton therapy for children who benefit most.
• The RO APM would not support innovation such as proton therapy treatment and research.

We ask you to join us in a national effort to reach out and contact your congressional leaders and make them aware of this proposed ruling and to request proton therapy be excluded from this model.

We can influence a positive change for future cancer patients. Please help us ensure future cancer patients have access to proton therapy as a treatment option.

ACT NOW!

Nashville, Tennessee (April 26,2019) — Governor Bill Lee signed bill SB 195/HB 184, also known as the “Proton Therapy Access Act” which requires the state health insurance plan to extend coverage for proton radiation therapy as an approved cancer treatment option.  The bill received overwhelming approval in the House of Representatives with a 94-0 vote.  The measure previously passed The Senate with a 27-1 vote.

Don Denton, President of Tennessee Cancer Patient Coalition and a prostate cancer survivor said, “This bill allows members of the Tennessee State health plan greater access to one of the world’s most advanced cancer treatment options. It’s the mission of our organization to gain insurance coverage for everyone, and today we took a step in that direction. Tennessee’s cancer patients can thank House sponsor Rep. Robin Smith (R, Hixson) and Senate sponsor Sen. Becky Massey (R, Knoxville), along with several co-sponsors. Additionally, we appreciate the leadership of our state legislature for their support of providing access to proton therapy, currently accessible in three locations in Tennessee.”

Carl Koella III, President, Provision CARES Proton Therapy Knoxville said, “We have been serving the state of Tennessee since January 2014, and today we celebrate the passage of this bill as a victory for members of the state insurance plan across the state who can now have expanded coverage for proton therapy.”  Dr.  Aashish Shah, President of Provision CARES Proton Therapy Nashville, the newest proton center in Tennessee treating cancer patients in Franklin, said, “Members of the state plan will now have access to proton therapy for cancer treatment which can reduce damage to nearby tissue and organs thus providing fewer side effects and a better quality of life both during and after treatment.”

Proton therapy is an advanced form of radiation therapy that is noninvasive and uses a single beam of high-energy protons to kill cancer cells. Both standard x-ray radiation and proton radiation damage cancer cells, but unlike standard radiation therapy, proton therapy deposits the majority of the radiation dose directly into the tumor.  This spares nearby healthy tissues and organs from receiving radiation, thus improving outcomes by reducing damaging side effects and complications, compared to conventional radiation.

About Tennessee Cancer Patient Coalition

Tennessee Cancer Patient Coalition, led by President, Don Denton, author and prostate cancer survivor, was formed in 2015, and serves as an advocate for cancer patients and their caregivers in the State of Tennessee.  Tennessee Cancer Patient Coalition collaborates with former cancer patients to educate government officials and support legislation that can positively impact treatment, research, coverage and outcomes for cancer patients.

Media Contact:

Don Denton, President

Tennessee Cancer Patient Coalition

info@tncancerpatient.org

(865) 437-9545

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TENNESSEE LEGISLATORS AGAINST CANCER – March 1, 2019

Let’s Support Tennesseans with Cancer!

Dear Legislators,

Eight years ago this month cancer and I were slugging it out.  Only ONE treatment existed that could preserve my life and quality-of-life:  proton therapy!  Talk to anyone about this amazing option and you’ll hear it described most often as miraculous.  As one who has been there and done that, I don’t feel like I’ve ever had cancer!

My insurance company tried to mandate my treatment–against the recommendation of my nationally acclaimed oncologist!  It claimed that proton therapy was too new, experimental, and unproven.  Ridiculous, unfounded, despicable?  You bet!

I had to go to another state for treatment since Tennessee didn’t offer it at the time.  Back then only eight (8) proton centers existed in the United States, and today there are thirty (30) with another couple of dozen under development.  Robert Wilson conceived proton therapy as a cancer cure in 1946; doctors treated the first patient in 1954; the FDA approved it in 1988; Medicare started covering it in 1998; about 140,000 cancer patients have taken it with incredible results.

This year I’m hoping that everyone is astute to realize that proton therapy is the real deal, a paradigm shift in treating cancer.  I want my fellow Tennesseans to have the same right of choosing the cancer treatment best for them as recommended by their doctors.  Our state is incredibly blessed to lead the nation in this world-class technology, and it’s high time to allow our citizens the choice to take it.  Support the Proton Therapy Access Act, SB0195/HB0184.

Kind regards,

Don Denton

President, Tennessee Cancer Patient Coalition

Meet Alexa Gash, Cancer Survivor

Alexa Gash is a young cancer survivor. At age 29 she received a diagnosis of having throat cancer–after only four years of marriage to her basketball coach husband, Peter, and recently giving birth to their first baby, a cutie named Valentina. The conventional treatments would have been surgery, chemotherapy, and radiation, which would have resulted in the removal of her teeth, the inability to salivate, the loss of her sense of taste, and needing a feeding tube. For good measure, the possibility of cancer recurrence would be high.

Can you imagine such a situation for a young lady like Alexa? Fortunately, she discovered proton therapy and its ability to kill cancer cells without harming healthy tissue. The family packed up and headed to Tennessee’s proton center in Knoxville.  Guess what happened?  Their insurance company refused to provide coverage! It never relented, leaving the Gash family on their own. Fortunately, they found a way.

Today she is doing great—thanks to proton therapy—without the horrific quality of life issues that would have been caused by the conventional treatments. For anyone who thinks her case is the exception relative to insurance coverage, think again. It’s the norm in Tennessee, and anyone with a heart should know that’s not right.

Just imagine if you had a daughter, son or other loved one diagnosed with cancer and needed proton therapy. Would you think it’s okay for their health insurance to deny coverage for the only cancer treatment that can save their life and quality of life? Tennessee needs a law to prevent this abuse of insurance power over our citizens’ lives.  Support the Proton Therapy Access Act, SB0195/HB0184.  It’s a life and death issue for many people–people just like Alexa.

Don’t Think Cancer Will Affect You?

Think again. What percentage of the U.S.A. population will be diagnosed with cancer sometime during their lifetime?

(a) 9% (b) 24% (c) 33% (d) 38%

If you guessed anything less than (d) 38%, you guessed wrong.  Everyone knows somebody who has or has had cancer. No one is exempt from this terrible disease. The great news is that if diagnosed early, in most cases it can be beaten. The bad news is that Tennessee has the tools to do so, but insurance companies block cancer patients from using them. YOU can affect change!

TENNESSEE LEGISLATORS AGAINST CANCER – FEBRUARY 19, 2019

Let’s Build the Momentum Against Cancer!

Dear Senators and Representatives,

Welcome to Nashville and the 111th Session of the Tennessee Legislature!  You serve an important responsibility in acting on behalf of our citizens.  The Tennessee Cancer Patient Coalition is eagerly looking forward to working with you this year to advance healthcare in our state at no additional cost!

We greatly appreciate Senator Becky Massey and Representative Robin Smith for being the primary sponsors of the Proton Therapy Access Act, SB0195/HB0184.  Most of you are already familiar with this vitally important bill.  It would permit state employees to receive insurance coverage for hypo-fractionated proton therapy cancer treatment at the same reimbursement rate as conventional intensity modulated radiation therapy (IMRT).

Tennessee’s citizens have already spoken loudly and clearly that they want this bill passed into law!  Last year the Tennessee Legislature responded overwhelmingly in response to the public outcry, with 94% approval by the Senate and 86% approval by the House.   If you’d like to be included in a winning effort that would appeal to your constituents, you should sign on to become a co-sponsor of the bill.

If you’d like to know more about proton therapy, the bill, its history, etc., please don’t hesitate to contact me at 865-437-9545 or don@tncancerpatient.org.  I’d be happy to help you!

Best regards,

Don Denton

President, Tennessee Cancer Patient Coalition

Our Sympathy

The TCPC extends sympathy to the family of Rep. Charles Sargent, who passed away following the last Session after a long battle with cancer.  He chaired the House Finance, Ways and Means Committee.  Rep. Sargent provided a powerful voice in favor of the proton bill in 2018.  He gave a passionate appeal to his fellow legislators in urging them to support it as well. We are hopeful that his influence will be felt in the coming Session, too.  We remember him for his service to our state and its cancer patients.

Dr. Andrew Lee Tells It Like It Is!

In a previous testimony to the Senate Commerce

and Labor Committee, Dr. Andrew Lee, who served as the Medical Director of world-renown M. D. Anderson Cancer Center, gave this sage advice:  “Tennessee is being offered a Mercedes at a Yugo price.  It’d be crazy to not take the deal.”  Nothing has changed.  This year’s Proton Therapy Access Act, SB0195/HB0184, is an incredible opportunity for our state employees to gain access to the world’s most advanced cancer treatment at no extra cost to the State, insurance companies or patients.

Oklahoma Jury Awards $25.5 Million in Damages Against Aetna for Denying Proton Therapy for Cancer Patient.

Orrana Cunningham lost her life to cancer when Aetna denied her the only treatment that could save her life.  The jury determined that “Aetna recklessly disregarded its duty to deal fairly and act in good faith with the Cunninghams.”

This situation is happening in Tennessee as well.  Our citizens are being denied coverage for proton therapy, even when it’s the best option recommended by their doctors.  This year’s bill to help state employees represents a small step toward correcting this serious problem.