2019-07-protonbobtales

Dear Members (a note from Bob Marckini):

To say there’s a lot happening in the proton world would be an understatement as you’ll learn in this month’s BOB Tales.

The greatest frustrations Deb and I experience day in and day out are the routine denials of insurance coverage by private insurers for proton therapy to treat prostate cancer. When men hear the news, “you have prostate cancer,” their world is shaken. After the dust settles and they begin their search for a treatment option that will destroy their cancer and preserve the quality of their lives, many gravitate to proton therapy. If they’re lucky enough to be over 65 and covered by Medicare, generally there’s no problem—the treatment is covered. But many with private insurance learn at the end of their due diligence, that the treatment they want—the treatment they believe is best for them—is not covered by their insurance. At this point, they have three choices: 1) Fight the battle through the appeals process, often a long, time-consuming, and frustrating process that usually ends in failure; 2) Pay out-of-pocket, an option that can draw down their life savings; 3) Choose a different treatment option, one that may come with more side effects, that their insurance provider will gladly cover because it’s less costly.

Fortunately, some changes may be coming:

Hypofractionation (higher doses/fewer treatments) is driving down the cost of proton therapy;
A new survey, which we cover in this issue, shows the benefits of proton therapy;
Other studies, also presented in this newsletter, report the advantages of proton therapy;
And, clinical trials are under way, comparing proton to IMRT, which I believe will confirm the superiority of proton therapy, thereby forcing insurers to pay for treatment.

The problem is—recognition of proton benefits won’t happen overnight. And some diagnosed today can’t or won’t wait several years for these efforts to bear fruit.

There is still hope for the near term. A new effort is materializing that could very well change the landscape for men who desire proton therapy for their prostate cancer and have been denied coverage by their insurer. It has its roots in the most recent annual National Proton Conference in Miami, FL. An attorney from a prestigious California law firm attended the conference and saw firsthand the scope and magnitude of the insurance denial problem. His firm—like many others—has been involved in lawsuits representing patients denied coverage for proton therapy, and their unique approach seems to be gaining traction. The principals in this firm believe that a carefully coordinated effort among proton centers, patient advocates, and appropriate law firms could provide significant leverage and benefit to those who have been denied coverage. And this goes beyond prostate cancer coverage. This firm launched the Proton Therapy Law Coalition and held their first summit last month. You’ll read about this exciting initiative in this month’s BOB Tales.

This month we also report on new proton centers that have opened and others in development; we include interesting and important health information; and as always, we have some great humor and what we think may be one of our best brain teasers ever. Finally, we’ve written a story about the loss of a BOB member who served our country with great distinction; a very successful businessman; a fierce proton advocate; and a dear friend who lived life to the fullest and gave back in more ways than I can count.

Bob Marckini

As always, we welcome and appreciate your feedback on our newsletter. Just send an email to DHickey@protonbob.com.

To print the BOB Tales newsletter or view the newsletter with a larger font size, click here for the PDF file.

In this Issue:

New Legal Initiative Provides Hope for Insurance Denials
Judge Recuses Himself from UnitedHealthcare Proton Therapy Lawsuits
New Survey Compares Proton Therapy to Seeds, Conventional Radiation and Surgery
Proton Therapy Lowers Risk of Side Effects Compared to Conventional Radiation
In Memoriam: BOB Member, Jim Tuggey
Pesticides in Fruits and Veggies
Processed Foods Damage Your Gastrointestinal Tract

New Legal Initiative Provides Hope for Insurance Denials

While Medicare routinely covers proton therapy for a multitude of disease sites, many private insurers continue to deny medically necessary proton therapy. When patients discover the benefits of proton therapy, it’s difficult to process the disappointing news that their insurer will deny their claims knowing full-well that proton therapy is likely the best—and in some cases—the only treatment option for them. Insurance companies rely heavily on a multitude of factors when they deny coverage for proton therapy:

The patient will give up on the claims and appeals process and seek IMRT or surgery;
The endless web of boilerplate denial letters will inhibit the pursuit of legal action, often called, “Denial by Delay;”
Providers, advocates, patients, and other proton therapy stakeholders will never challenge insurance practices in a widespread, national and cohesive manner.

Although the November 2018 $25.5 million judgment against Aetna serves as a wonderful victory for proton therapy patients, it’s just one battle in a multi-jurisdiction war. Victory in this fight against the insurance companies will require sustained successes in multiple theaters of combat.

The Summit

On May 10, 2019, a group of 35 proton therapy providers, proton patient advocates, and attorneys convened for the first California Proton Therapy Legal Summit held in Orange County, CA. Fifteen attendees were present in-person and another 20 attended via videoconferencing, including Deb Hickey and Bob Marckini representing the BOB. The summit was hosted by two Southern California-based law firms, Kantor & Kantor, LLP (Northridge, CA) and Callahan & Blaine (Santa Ana, CA) who on March 26, 2019 filed a nationwide Employee Retirement Income Security Act (ERISA) class action lawsuit against UnitedHealthcare challenging its use of internally-developed clinical guidelines to justify widespread and systematic denials of proton therapy when such denials go against generally accepted standards of care.

The goal of the summit was to launch the formation of the Proton Therapy Law Coalition, an alliance devoted to bringing together proton therapy providers, patient advocacy groups, and skilled ERISA and bad-faith insurance litigation attorneys to collaborate on strategies to bring about nationwide pressure on insurance companies to cover proton therapy. The approach of the coalition is holistic, seeking to coordinate and maximize the collective skills of participating providers, advocates, and attorneys during the claims and appeals process, in courtrooms and in state legislative chambers.

The Challenge

On one side are insurance companies, which are completely unified in a corporate chain that binds internal and external medical “reviewers,” insurance representatives, and benefit managers (who write the clinical guidelines) all against provider, patients, and advocates. On the other side, there is a divergence of focus and interests—academic and private proton therapy centers, advocacy groups strewn across the country, and a smattering of cases filed by various attorneys in several states. What has been missing is coordinated and unified action.

One Solution

Insurance companies will feel the weight of their wrongful denials of proton therapy only if it affects their bottom lines. The only way to affect their bottom lines is to force them to appear in courtrooms, spend money on civil defense attorneys and make them open up their pocketbooks to settlements and judgments.

The summit featured speaking presentations first from a series of attorneys who have had success in fighting insurance companies over health claim denials. These attorneys spoke about class action lawsuits recently filed in federal courts in Massachusetts and Florida as well as a recent substantial trial verdict in Oklahoma:

Rich Collins, of Callahan & Blaine (Santa Ana, CA), spoke about Kate Weissman, whose denial for proton therapy by UnitedHealthcare has led to the filing of a nationwide ERISA lawsuit in Boston.
Tom Paruolo, of DeWitt, Paruolo & Meek (Edmond, OK) shared the sheer brazenness of Aetna’s army of lawyers and their trial strategy in an Oklahoma bad faith trial that led to a jury awarding $25.5 million dollars, including $15 million in punitive damages.
Stephanie Casey, of Colson Hicks Eidson (Coral Gables, FL), spoke about Richard Cole, a prominent Miami attorney who was denied proton therapy for his prostate cancer. To date, at least two federal judges have recused themselves from this case, including one who blasted UnitedHealthcare for issuing “immoral and barbaric” denials of treatment for cancer patients. See article on this case on page 7.
Lisa Kantor, of Kantor & Kantor (Northridge, CA), spoke about ERISA, a federal law enacted in 1974 that governs health insurance benefits obtained through one’s employer. Mrs. Kantor provided valuable insight for providers regarding some of the limitations of ERISA and how ERISA can be used effectively to recoup what would otherwise be unpaid claims.

An Unexpected Reunion

A remarkable moment took place later in the day when Oregon State Sen. Bill Hansell, a cancer survivor who was treated at Loma Linda in 2000 for prostate cancer reunited with his treating radiation oncologist, Dr. Les Yonemoto after 19 years. Sen. Hansell is sponsoring SB 740, a proton therapy access bill in Oregon that requires health benefit plans that cover radiation therapy to cover proton beam therapy on a basis no less favorable than other covered benefits. Senator Hansell shared his personal story and spoke about how his experience at Loma Linda fueled his desire to do something about proton therapy coverage while in a position of power. SB 740 passed the Oregon Senate, 30-0, in March 2019 and received a “do pass” recommendation in the Oregon House on May 31, 2019.

The summit featured a wonderful presentation by leading radiation oncologist, Dr. Andrew Chang (California Protons-San Diego), who described the historical development of proton therapy technology, which can be traced back to the turn of the 20th Century and later found roots in the Manhattan Project. Dr. Chang also shared success stories about proton therapy for all types of cancer and disease sites. Attorneys and advocates also met with some of the world’s leading radiation oncologists: Dr. Les Yonemoto (Oklahoma City), Dr. Aashish Shah (Provision-Nashville), Dr. Sameer Keole (Mayo Clinic-Phoenix), and Dr. Joseph Kang (Loma Linda). Although the summit included these prominent names, the Proton Therapy Law Coalition has committed itself to reaching out to other providers and centers, spreading the message about unifying and coordinating action against insurance companies.

The summit also featured presentations from the Alliance for Proton Therapy Access about the wonderful work the alliance does garnering media and public exposure for patients fighting with their insurance companies for proton therapy coverage. Ann Brown, Molly Daniels, and Aaron Alberico of the alliance spoke about their federal advocacy efforts, which include promoting a Cancer Patients’ Timely Treatment Bill of Rights to federal legislators. Jack Weber, an outspoken and tireless patient advocate, spoke about his idea to create a legal foundation that will help streamline the connection between providers, patient advocacy groups and attorneys so that legal assistance can be provided in a timely and effective manner to patients interested in obtaining such legal resources.

The Proton Therapy Law Coalition left the summit resolving not to wait any longer for the insurance industry to change the errors of its ways. In the coming weeks and months, the coalition will:

Reach out to proton therapy providers to gauge interest in having attorneys assist in issues arising with insurance during the claims and appeals process.
Seek to work with interested providers in crafting coverage recommendations to major US employers with self-funded health plans to persuade employers to cover proton therapy.
Work with interested current and former patients who would like to enforce their legal rights in the claims/appeals process or in the courtroom where appropriate.
Work toward an ultimate goal of getting model proton therapy access legislation in the hands of the National Conference of State Legislatures.
Continue to reach out to providers and advocacy groups interested in working together to create real change.

We can’t wait any longer. It’s time to force the insurance companies to change their practices.

Judge Recuses Himself from UnitedHealthcare Proton Therapy Lawsuits

At least two lawsuits have been filed against UnitedHealthcare in the past few months alleging the insurance company improperly denied patients coverage for proton therapy that insurers have long been reluctant to pay for.

Recently, U.S. District Judge Robert Scola recused himself from deciding one of the lawsuits filed in Miami because of personal experience with the cancer treatment. He wrote in an order of recusal, “It’s undisputed among legitimate medical experts that proton radiation therapy is not experimental and causes much less collateral damage than traditional radiation. To deny a patient this treatment, if it’s available, is immoral and barbaric.”

According to the complaints, UnitedHealthcare denied coverage for proton therapy for one patient’s prostate cancer and another patient’s cervical cancer. In both instances, the healthcare giant determined the treatment to be experimental and unproven. But the patients, who are seeking class action status for their lawsuits, argue that proton therapy is a decades-old effective and established cancer treatment. It was approved by the Food and Drug Administration in 1988 and is paid for by Medicare, according to the complaints.

Learn more.

New Survey Compares Proton Therapy to Seeds, Conventional Radiation and Surgery

Provision Healthcare commissioned Bryant Research to conduct a survey comparing patient satisfaction levels with selected prostate cancer treatment modalities. The survey was developed in conjunction with Provision leadership using a national listed sample of patients. It focused on patients between ages 50 and 75 with a history of prostate cancer who were at least 12 months post treatment. They collected data on patient reported quality of life measures after treatment.

The sample targets were 200 patients each who had chosen surgery, conventional (X-ray) radiation, brachytherapy (seeds) and proton therapy. The survey was conducted between 2013 and 2015. Here are some of the findings from the survey:

While most participants felt a second opinion on treatment options was important, the proton therapy group was significantly more likely to characterize a second opinion as “very important” than all others.
Roughly half those who chose a treatment modality other than proton therapy indicated they were unfamiliar with the proton option.
Most of the respondents in each treatment group held a positive impression of their chosen treatment modality.
Those who chose proton therapy were more positive (97 percent) about their choice than those who elected another course of treatment.
With the exception of those who elected surgery, respondents were more negative about surgery than any of the other options tested, with the proton therapy patient group expressing the most negativity.
Proton therapy patients placed significantly higher importance than those in all of the other groups on each of the following aspects:
- Overall quality of life
- Ability to control urinary function after treatment
- Living life the way I want to after treatment
Proton patients also rated the importance of maintaining sexual function significantly higher than those who chose conventional radiation.
Proton therapy patients (97 percent) were significantly more likely to recommend their treatment option to other men with a prostate cancer diagnosis than those who experienced the other types of treatment were to recommend their choice:
- Brachytherapy (70 percent)
- Conventional radiation (67 percent)
- Surgery (57 percent)
Proton therapy patients (97 percent) also were significantly more likely to say they would select this same treatment option should they have to make the decision today, than those who experienced other treatment options:
- Brachytherapy (68 percent)
- Radiation (66 percent)
- Surgery (26 percent)
Overall, proton therapy patients reported the best results maintaining sexual function after treatment.
Proton therapy patients were significantly more likely than radiation or surgery patients to report treatment did not interfere with their overall quality of life after treatment.
Proton therapy patients were significantly more likely than all others to report treatment did not interfere with the ability to control urinary function after treatment.

Proton Therapy Lowers Risk of Side Effects Compared to Conventional Radiation

Cancer patients receiving proton therapy instead of traditional photon radiation are at a significantly lower risk of experiencing side effects, while cure rates are almost identical between the two groups. Researchers in the Perelman School of Medicine at the University of Pennsylvania conducted the largest review of its kind to evaluate whether patients undergoing radiation therapy at the same time as chemotherapy experienced serious adverse events within 90 days.

Researcher’s looked at grade-three (severe) side effects including pain or difficulty swallowing, difficulty breathing, nausea or diarrhea, among others. Their clinical experience is that concurrent chemoradiation therapy patients treated with protons, rather than photons, tend to have fewer side effects, however they didn’t expect the magnitude of the benefit to be this significant.

For this study, researchers evaluated data on 1,483 cancer patients—391 received proton therapy and 1,092 underwent photon treatment. All patients had non-metastatic cancer and were undergoing chemotherapy and radiation intended to be curative. Patients with brain cancer, head and neck cancer, lung cancer, gastrointestinal cancer and gynecologic cancer treated with concurrent chemoradiation were included. The primary result was whether patients experienced radiation side effects that were grade-three or higher within 90 days of treatment.

Data showed 11.5 percent (45) of proton patients experienced a grade-three or higher side effect. In the photon group, 27.6 percent (301) experienced a grade-three or higher side effect. A weighted analysis of both groups, which controlled for other factors that may have led to differences between the groups, found that the relative risk of a severe toxicity was two-thirds lower for proton patients compared to photon patients.

Importantly, overall survival and disease-free survival were similar between the two groups, suggesting that the reduction in toxicity seen with proton therapy did not come at the cost effectiveness.

Several trials are under way, but it will be years before researchers have that data. “That’s why the information we do have is so critical, and our findings here point to a real benefit for our patients,” said the study’s senior author, James Metz, M.D., chairman of radiation oncology, leader of the Roberts Proton Therapy Center at Penn, and a member of Penn's Abramson Cancer Center.

Learn more.

In Memoriam: Jim Tuggey

By Bob Marckini

It would be impossible to write about all the wonderful men in our group who have passed from this life over the past 19 years of our existence. But one gentleman truly deserves the honor of being recognized and remembered for who he was, what he accomplished, and how he affected our lives. And that is my dear friend, Col. (retired) Jim Tuggey.

I first met Jim in the spring of 2001. We were both members of the Proton Advisory Council at Loma Linda, and we became instant friends. Both amateur golfers, we jumped at the chance to play, with other former proton patients in the annual Ken Venturi Proton Charity Golf tournament. None of us four regulars was particularly good golfers, but we each had a golf shot that contributed to the team’s scoring in the scramble format that was the tournament protocol. Jim’s specialty was putting, which is the “money stroke” in golf. And with Jim’s putting expertise, he led us to first place, net, on May 16, 2005. The trophy still proudly sits on the desk in my office at home.

It would be hard in this small space to list all of Jim’s accomplishments, so I will touch on just a few of the high points. Jim began life in Texas and lived there most of his life, born to a strong Christian family of farmers and musicians. After military high school, Jim enlisted in the Army, as a bandsman playing the tuba and other brass instruments at Fort Ord, CA. He enrolled in Officers’ Candidate School (OCS) in the early ’50s as the Cold War and Korean Conflict were erupting. After OCS he was deployed to fight in Korea, experiencing front-line action and several frightening near-misses. Back stateside, he met Janet, who became his bride, as well as the love and focus of his life for 59 years.

Still in the service, he was posted all over the world, beginning in nine states, France, Germany and Vietnam. Along the way, he transferred into aviation transportation services in the Army and rose through the ranks as a pilot and air logistics expert, obtaining the US Army’s Master Aviator badge for over 3,000 hours logged in each of rotary-helicopter and fixed-wing aircraft. He was involved in helicopter combat and later in training of South Vietnamese helicopter pilots. His knowledge and expertise led to groundbreaking achievements in both military and civilian helicopter programs.

Jim retired as a full colonel in 1977 with two Legions of Merit, two Bronze Stars, two Meritorious Service Medals, four Air Medals and numerous other awards and decorations. He was also recognized as a thought leader on the latest aviation transportation mode—the helicopter.

Civilian Life

As a civilian, he was vice president for Bell Helicopter and moved to Iran, Singapore, Pakistan, China, Indonesia, New Zealand, Nepal, Japan and finally post-war Vietnam. During that time his stature within the aviation industry – particularly the helicopter industry – became legend.

Back stateside the second time, Jim and Janet had three boys, nine grandchildren and two great grandchildren. Jim’s superb singing voice made him a candidate for the world renowned Vocal Majority Chorus. And while Jim was a member, the VMC won 14 national championships, recognizing Jim as “Barbershopper of the Year” in 2003, later installing him in the Chorus Hall of Fame.

A Bump in the Road

A prostate cancer diagnosis was a bump in the road for Jim. His passion for proton therapy and Loma Linda was palpable. He had a wonderful experience of treatment and never missed an opportunity to tell anyone who would listen about this extraordinary technology. Several years ago he established a blog and posted to it regularly, influencing hundreds of men to choose proton therapy for their prostate cancer. The blog earned two prestigious Internet awards for excellence. As a member of the Loma Linda Proton Center Advisory Council he worked tirelessly to help raise funds for proton therapy research. He was also a regular contributor to this effort.

When we asked for volunteers to sponsor “Internet-challenged” BOB members without email access to our newsletters, Jim was the first to raise his hand. Each month Jim would download and print about 40 copies of the BOB Tales, attach a personalized introductory note, and mail them to his 40 “sponsees.” Over the years he never said “no” to a request for help with our “ministry.”

Janet passed away in 2014, and Jim was never the same. He passed away on April 16, 2019. His full and exemplary life speaks to his many achievements. But none is greater than his steadfast loyalty, service and love for his God; his wife and partner for life, Janet; and his children, grandchildren and great-grandchildren. And finally, as one of his sons wrote, “He pledged and served a lifetime in fidelity to our nation and its people.”

Golden Voice—Golden Life

Over the years Jim gifted me with several CDs and DVDs of the Vocal Majority Group. I play them regularly and crank the volume up high, while remembering my friend and his golden voice. If you’d like to hear the magnificent sounds of this incredible group watch this video of “The Armed Forces Medley.” If you look closely, you can see Jim in the third row (second from the top from 1:14 – 1:21) farthest right side, singing his heart out. Next to spending time with his bride and his family, this is what he loved doing most. Jim was one of a kind.

We have been producing BOB Tales newsletters monthly for more than 18 years. During this time there have been important articles that many new members have not seen, and some older members may have forgotten. So, we decided to periodically re-run some articles from past newsletters. This one is from March 2005.

The Importance of a Second Opinion

Remember the old joke about the lady whose doctor told her she was too fat? She said she wanted a second opinion, and he said, “OK, you’re ugly too.” Well, seriously, nowhere is a second opinion more important than in medicine.

Last month, a man called us and said he’d been diagnosed with prostate cancer. His local pathology lab rated his Gleason score at 9 (5 + 4). We asked if he’d gotten a second lab to read his slides. He hadn’t. So he sent his slides to one of the premier U. S. pathologists, Dr. David Bostwick. The results came back Gleason 7 (3 + 4). Wow! That’s a significant difference, and the treatment protocol would be reflective of that difference.

This example, once more, points out the importance of obtaining a second—and sometimes third—opinion, particularly on pathology results.

Not too many people can say that they died and lived to tell about it …

By Carmela Rincon Loelkes, Grateful Patient

One August, while recovering at home from reconstructive shoulder surgery, I woke up feeling dreadfully dizzy, which evolved into severe chest pains almost immediately. As soon as help arrived, I passed out. At that point, the firefighters couldn’t find a pulse. Not even the many chest compressions and shocks from the defibrillation machine could jump start my heart. After 10 minutes of trying, the firefighters informed my husband I had died. But God had a different plan.

As the ambulance raced me to Loma Linda University Medical Center, the paramedics worked tirelessly to bring me back to life. As we pulled up to the ER, I miraculously woke up.

Once admitted, the physician explained to my husband that I’d experienced a massive pulmonary embolism, and I was not out of danger. My best chance was emergency surgery, yet there was no promise I’d survive.

During the operation, surgeons used a relatively new and innovative technology called EKOS TM Acoustic Pulse Thrombolysis TM. The procedure breaks up vascular blood clots with a deep penetrating ultrasound and drives anti-clotting medication into lung tissue, where it dissolves the clots.

I’m alive and well thanks to the diligent efforts of firefighters, paramedics, and the tenacious medical staff at Loma Linda University Health. Through your support of Vision 2020, Loma Linda University Health is continuously enhancing their approach to general healthcare, and most important, saving lives.