It’s hard to believe that my daughter, Deb, has been working with me for more than eight years. And what a blessing she’s been!
When I started this “ministry” in December 2000, we were six guys from different parts of the country—all technically oriented—who wanted to keep in touch, share information on our PSA results after treatment, and compare notes on any side effects we might be experiencing. We also wanted to stay connected with this extraordinary technology called proton therapy that we all chose to treat our prostate cancer.
I started issuing a monthly newsletter at the very beginning and I remember clearly how much work it was to put the BOB Tales together. It was often 10-12 pages and covered topics like growth in our membership, testimonials, featured member-of-the-month, stories about how our members were helping others discover proton therapy, new developments in proton therapy, improvements in prostate cancer diagnostics, health tips, cancer prevention, our new website, and I always included something “schmaltzy” at the end to make members smile or just feel good.
Putting a “Contact Us” link on our website and including my email address at the back of my book was a blessing and a curse. It motivated newly diagnosed men to take the initiative to learn more about a relatively unknown treatment option—one that might not only destroy their cancer but leave them with an excellent quality of life after treatment. The curse part was the growing number of phone calls and emails, from a few dozen a month initially, to hundreds. I was going under, and completely unable to keep up with the tidal wave of work.
Then Deb came along.
It wasn’t easy for me to persuade her to join me. She said, “Your support group is all about men and prostate cancer. I’m a female and I know nothing about this subject. How could I possibly help?”
I had one thing going for me in this debate. Deb’s company was running out of space and they were moving from a suburb close to Deb’s home to downtown Boston, a nightmare of a commute for her, and just at the time she and her husband were adopting a baby. If she joined me, she could work out of her home. I waited for the right time to play this card.
Deb was a psychology major in college with post graduate education in graphic design. At the time we began discussing her joining me, she was director of marketing for the first and largest search engine marketing firm in the world. She was also smart, articulate and resourceful, as well as a person people loved being around. “You’re perfect for the job,” I said. “Your education, personality, communication skills, and work experience will be helpful in our mission and, in time you’ll learn what you need to know about prostate cancer and proton therapy.”
I was so right.
Through my “excellent” skills of communication and persuasion—plus a little begging—I persuaded Deb to join me.
Today, she is probably one of the most knowledgeable, non-medical people I know—male or female—on the subject of prostate cancer in general, and proton therapy in particular.
Since joining me, she has re-designed and reformatted our newsletter, edited and re-launched our website, updated our PowerPoint presentation, established a Facebook page and blog, and expanded our patient reference lists. She handles 95 percent of the inquiries that come in through our social portals, as well as most of the phone calls. Our members love her, and she loves what she’s doing.
Last month Deb traveled to Scottsdale, AZ to represent the BOB and our 10,000 members at the annual National Association for Proton Therapy Conference. Surrounded by more than 250 medical and administrative professionals—the elite of the proton world—Deb was on a panel and spoke on the subject of proton therapy advocacy. Her summary of some of the events from the conference is in this issue of BOB Tales.
Who knew back in 2000 when six guys got together to form the Brotherhood of the Balloon, we’d grow to 10,000 members from all 50 U.S. states and 39 countries and become a major force in the proton movement. This would not have happened without Deb Hickey.
All I can say is, thank God for Deb.
Our news feature this month is on a negative article on proton therapy in The New York Times. We received so many inquiries about this from members we thought we would write about it. A link is provided to the article and we have attempted to put the story in proper perspective.
We are also covering, in some detail, a battle under way in Tennessee involving a bill that would allow some insurance coverage for proton therapy. With full support of the Tennessee House and Senate, they still face a major obstacle to the bill’s passing.
Finally, June is a special month in some ways: June 3 is National Cancer Survivor’s day and we can all relate to that. The week of June 11 is National Men’s Health week, a subject near and dear to our hearts: Every BOB Tales provides important information on maintaining and improving member’s health. And June 17 is Father’s Day. Most of us are fathers and because we chose proton therapy for our prostate cancer, we hope to be around to spend many more years with our children and grandchildren. So … Happy National Cancer Survivor’s Day, Happy National Men’s Health Week, and Happy Father’s Day to our members!
We have another packed BOB Tales newsletter with a little something for everyone, including the NAPT Conference review, a new proton center opening, a number of important health tips and a great brain teaser.
As always, we hope you enjoy the May issue of BOB Tales and we welcome your feedback.
To print the BOB Tales newsletter or view the newsletter with a larger font size, click here for the PDF file.
In This Issue:
- Negative Article on Proton
- Breaking News: Tennessee Proton Therapy Bill
- The Importance of Support When Battling Cancer
- Call for Urologists
- Recap: NAPT Conference 2018
Negative Article on Proton
There’s an old saying about journalism, “If it bleeds, it leads.” News is a money making industry, and according to Shutterstock, it’s an industry that “doesn’t always make the goal to report the facts accurately.” Watching and reading the news, according to this source “can be a psychologically risky pursuit, which could undermine your mental and physical health.”
Much of the news we watch and read today is fear-based sensationalism. Its aim is to grab the viewer’s attention. Such was the case with a recent New York Times article titled, For Cancer Centers, Proton Therapy’s Promise Is Undercut by Lagging Demand. The article was published last month. It then was picked up by a number of news outlets and received a lot of exposure.
It didn’t take long for Deb and Bob’s inboxes to get flooded with emails from angry members all over the world. Here is a sampling of comments we received:
- “This is outrageous!”
- “It’s simply not true.”
- “My results were outstanding.”
- “My cancer was cured and no side effects. My friends who had surgery or conventional radiation have a very different story to tell.”
- “This guy doesn’t know what he’s talking about.”
- “How can they print this stuff?”
The author did acknowledge that proton therapy was a superior technology “for treating tumors in delicate areas where surgery was not an option—near the eye, for example—and in children, it remains the best choice,” he wrote. But the theme of the article was that proton therapy hasn’t been proven to be worth the higher cost for treating common cancers such as prostate and breast cancer; there is too much proton capacity and there aren’t enough patients for the number of proton centers that have already been built.
The author chose to quote—as an authority on this subject—oncologist Dr. Ezekiel Emanuel, former policy adviser to President Obama and one of the architects of the Affordable Care Act. Dr. Emanuel is a controversial figure with interesting views on euthanasia and wasteful medical spending on elderly people. He has vowed, personally, to “cease accepting medical interventions” at age 75 according to the Los Angeles Times. This means “No colonoscopies, no cancer screening, no cardiac tests. Not even antibiotics or flu shots.” Dr Emanuel also has a history of being negative on proton therapy.
It certainly would have been a more balanced article if the author had spoken with any one of the many brilliant medical professionals in the proton world. But that might not have served the author’s purpose or objective.
Like much news we read or hear in the media, there are elements of truth, but the perspective has been manipulated for sensationalism using such commentary as “medical arms race” and “the industry is littered with financial failure.” So much of the story is out of context, and parts are simply not true. For example, the Indiana proton facility did not close because of lack of patients; it closed for other reasons which we have covered in past BOB Tales.
The fact is, fewer than one percent of patients receiving radiation therapy are receiving proton therapy. Many physicians believe that upwards of 50 percent of patients treated with radiation would have better results with proton therapy. That means the market for proton therapy is at least 50 times larger. And with advances in proton therapy resulting from current and planned research, there’s little doubt the proton market will be much larger in the future. So, lagging demand isn’t the issue.
One can’t help but wonder if the author is correct, and proton therapy is in so much financial difficulty, why then is there an explosion in the number of proton centers around the world? When Bob Marckini was treated in 2000, there was one proton center in southern California at Loma Linda University Cancer Center. Today there are 28 in the U.S. and 41 proton centers in other countries. Hardly a month goes by when a new proton center announcement is made. Why would 69 institutions worldwide invest millions and millions of dollars in proton therapy if it’s an unproven technology without patient volume? And those investments continue.
Are there some difficulties at this stage of the evolution of proton therapy? Absolutely. But the issues are being dealt with; the technology is developing and expanding; and most important, patients are being cured and are being given the best opportunity for preserving the quality of their lives.
The biggest obstacle, from our perspective, is private insurance coverage. But with research under way on technologies such as hypo-fractionation and proton SBRT along with clinical trials, such as PARTIQoL and COMPPARE, the insurance issue will be resolved in due time.
In the meantime, we encourage you to take all the news you read, hear, and see on just about any subject, with a few grains of salt. Remember, “If it bleeds, it leads.”
Tennessee Proton Therapy Bill
After nearly five years in the works, the Tennessee State House and Senate recently voted to pass a bill to improve coverage of proton therapy for the insurance plans provided by the state. The Cancer Patient Choice Act would require the state of Tennessee insurance plans to cover hypofractionated proton therapy for any members who would otherwise have been approved to receive IMRT by a board-certified radiation oncologist.
Tennessee insurance plans cover over 276,000 lives. Supporters of the bill expected over 100 Tennessee employees (and family members) per year to benefit by having access to proton therapy. Tom Welch, president of Provision CARES Proton Therapy Center in Knoxville, said, “Not only does this bill establish coverage for Tennessee employees, it also establishes a precedent for other employers to also cover proton therapy.”
Those in support of the bill were hopeful Tennessee Gov. Bill Haslam would sign it earlier this month. The process has been lengthy, and since they had passed many key legislative steps, they were confident the governor would approve the bill.
Governor Vetoes Bill
Early this month, Gov. Haslam vetoed legislation that would have required state employee insurance to cover proton therapy. He argued the bill would burden patients with excessive charges from out-of-network providers.
“The provider advocating this bill rejected a medically appropriate plan for expanded coverage to instead pursue a political mandate,” Haslam said in a statement. “The state is committed to high-quality care that is medically appropriate and fiscally responsible for patients and taxpayers, but this mandate could put patients at risk and expose them to excessive charges from out-of-network providers.”
Sponsors of the bill, Sen. Mark Green and Rep. Bob Ramsey, have called for a special meeting to consider overriding the veto, a move supported by Executive Director Scott Warwick of the National Association for Proton Therapy. Warwick stated, “His statement that the bill could ‘put patients at risk and expose them to excessive charges from out-of-network providers’ is incorrect and misguided. The bill’s language, which improves access for cancer patients on the state health plan who would benefit from hypofractionated proton therapy, explicitly states that there will be no additional cost over standard IMRT to the patient, the state, or its insurers…”
Special Session to Override Possible
There may be hope for Tennesseans who seek proton treatment; there’s talk of a possible special session to override Haslam’s veto.
In a statement, Haslam specifically opposed the mandate language in the bill saying, “The state plan covers many forms of radiation treatment.”
Several private insurers cover at least part of the cost of proton therapy, as does Medicaid and Medicare.
“I have only concluded that he has bowed to the wills of the insurance lobby,” said Tom Welch. “The Speaker of the House and Lt. Gov. Randy McNally could call a special veto override session.”
Rep. Bob Ramsey said the plan is to wait to see what other bills the governor may veto before calling a special session.
BOB Member Fights Back
Since Don Denton’s successful proton treatment in 2011, he’s been a strong advocate for proton therapy in his home state of Tennessee. A few years ago, he launched the Tennessee Cancer Patient Coalition to educate others about proton therapy and “serve as an advocate for cancer patients and their caregivers.” The day of the veto, Denton changed the website’s home page to catch visitors’ attention and give them a straight path to contact legislators to call for a special session to override Gov. Haslam’s veto. Denton also links to his lengthy response to the veto on the home page.
Stay tuned. For immediate updates on this story, be sure to “like” our Facebook page.