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Proton Community Forum
October 10, 2014
To The Editor
All Things Considered
National Public Radio
1111 North Capitol Street
Washington, DC 20002
RE: Proton Therapy Community Dismayed by Inaccuracies in
Oct 1 All Things Considered Story on Proton Center Closure
Knowing that NPR prides itself on fair and accurate reporting, we were surprised and disappointed by the number of inaccuracies in Jenny Gold’s story entitled, “Proton Center Closure Doesn't Slow New Construction” on the 10/1/14 edition of All Things Considered. We believe that the reporter has been misinformed by some of her sources. Although the story was originally reported by Kaiser, since it aired on NPR, we would like to share some of the inaccuracies with you and ask that NPR revisit proton therapy with a more accurate report as to its benefits for thousands of patients with various kinds of cancers. Unfortunately, the story that just aired could leave listeners with a false impression of proton therapy's cost, efficacy and value to patients.
The Provision Center for Proton Therapy Response to the L.A. Times Article Dated August 28, 2013 and the Wall Street Journal Article of August 29, 2013 on Health Insurer Payment Policies for Proton Therapy - August 30, 2013
Articles in the week of August 26, 2013 in the Los Angeles Times and the Wall Street Journal concerning recent coverage changes by health insurance providers for proton therapy raised questions about the efficacy and cost effectiveness for treating prostate cancer. We believe these changes are short sighted and without merit and will provide the basis for our opinion:
Former Olympic Gold Medalist Scott Hamilton Joins Provision Center for Proton Therapy Board
"Proton therapy is one of the most significant advances in cancer treatment we've seen in our lifetime. As a resident of Tennessee, I am so grateful this technology is available in our state and I am honored to serve on the Provision Center for Proton Therapy board". Spoken like a true champion that he is by former Olympic gold medalist Scott Hamilton, a cancer survivor and American hero. Hamilton, a best-selling author, endured testicular cancer in 1997, and a brain tumor in 2004 and its recurrence in 2010.
Scripps Rebuts Report by California Technology Assessment Forum on Proton Beam Technology for Prostate Cancer
Benefits of proton therapy for prostate cancer patients are well established.
Jan. 2, 2013 -- The California Technology Assessment Forum (CTAF) today published its evaluation of proton beam radiotherapy technology for treating patients with prostate cancer. The CTAF uses the following five criteria to evaluate new and emerging medical technologies:
Statement of Robert Foote, M.D. Chair, Mayo Clinic Rochester department of Radiation Oncology
“There are some medical conditions where proton therapy has proven to be the superior treatment and others that require more research -- prostate cancer is one of those conditions. Men should be cautious about drawing conclusions from a single observational study which has not been peer-reviewed and we recommend they consult with their physician before making important decisions regarding prostate cancer treatment. Appropriate clinical trials are now underway. We hope to participate in answering these research questions when our proton therapy center opens in 2015.”
NAPT Responds to UNC Study Questioning Proton Therapy's Treatment of Prostate Cancer
Abstract is unremarkable and missing definitive data to make an informed decision.
Washington, D.C. (PRWEB) February 01, 2012
In response to a study conducted at the University of North Carolina/Chapel Hill, as reported by the Associated Press, that questions the effectiveness of proton beam radiation therapy for the treatment of prostate cancer, the National Association for Proton Therapy (NAPT) found the released abstract to be unremarkable and missing definitive data for physicians and prostate patients to make an informed decision regarding the best treatment option.
The full study, to be presented later this week at a poster session of the American Society of Clinical Oncology (ASCO) meeting in San Francisco, clearly was not meant to be definitive as noted in the AP story.
"It is an "observational study" requiring a more definitive approach as stated by the federal Agency for Healthcare Research and Quality (AHRQ). We look forward to seeing more data, and we are convinced that more rigorous studies will prove the over-all benefits of proton therapy for the treatment of prostate cancer," said Leonard Arzt, executive director of NAPT.
The NAPT is confident that come this fall at the American Society of Therapeutic Radiation and Oncology (ASTRO) meeting, clinicians and patients will learn about encouraging new studies underway validating the clinical benefits of proton therapy in treating prostate cancer. The proton community is committed to comparative effectiveness studies (CER) across the entire spectrum of prostate cancer treatment modalities.
National Association for Proton Therapy
Mayo Clinic's Investment
By: John Noseworthy, President and Chief Executive, Mayo Clinic
To the Editor:NYT (January 5, 2012)
Re “It Costs More, but Is It Worth More?,” by Ezekiel J. Emanuel and Steven D. Pearson (Op-Ed, Jan. 3):
We take issue with the assessment of Mayo Clinic’s motivation in investing in proton therapy, a kind of radiation used to treat cancers. Mayo Clinic is resolute in its commitment to advance new, superior treatments that best serve patients based on clinical evidence.
Our intent is not profit, nor is it to contribute to the medical arms race. In fact, we chose not to build a proton beam center on our Florida campus. That area was served by another center.
Instead, Mayo Clinic invested money — not American taxpayer dollars — to develop proton therapy centers that will provide more effective treatment and much-needed access for patients in the upper Midwest and Southwest.
Mayo Clinic continues to pioneer new treatments that benefit patients and advance science. Our proton therapy program will build on that tradition.
We will always do what’s best for our patients. We will carefully study proton therapy and other new therapies, compare clinical outcomes and offer high-quality, cost-effective, proven and safer treatments for patients.
NAPT Responds to New York Times Editorial
By: Leonard Arzt, National Association for Proton Therapy
Drs. Ezekiel J. Manuel and Steven D. Pearson (It Costs More, but is It Worth More? January 3, 2012), once again missed the (proton) mark on the benefits of proton beam radiation therapy for cancer patients. Proton therapy is a natural evolution in the advancement of radiation treatment with the advantage being increased dosage control while sparing healthy cells and tissue resulting in minimal side effects. This is why thousands of prostate cancer patients made informed decisions opting for proton therapy.
As for treating children, the authors are right that protons are a superior choice and "do a better job of limiting damage to normal cells and reducing risk." As for costs, comparisons to conventional radiation must always include the cost of side effects and quality of life measures. So, is proton therapy worth the cost? Absolutely. Just ask the patients who have been there and done that.
Many Men Underestimate Prostate Surgery Side Effects
By: Randy Dotniga
Friday, August 12 (HealthDay News) -- New research finds that men who undergo prostate removal often suffer more from incontinence and impotence than they expected, even when counseled beforehand about possible aftereffects.
The findings suggest there's a wide gap between what men with prostate cancer expect post-surgery and what actually happens -- and that many are shocked by the level of dysfunction after the operation.
Proton therapy: Is randomization needed?
By: Tami Freeman, Medicalphysicsweb editor
June 9, 2011 -- Are randomized clinical trials appropriate for demonstrating proton therapy's superiority to x-ray therapy? The European Society for Therapeutic Radiology and Oncology (ESTRO) meeting, held last month in London, was the venue of a contentious debate on this subject.
Acoustic Neuroma Patient Shares His Loma Linda Proton Treatment Experience
Posted first in the Acoustic Neuroma Association Forum on March 4, 2011
I am undergoing proton therapy treatments at Loma Linda University Medical Center, Loma Linda, CA. It's a 28 treatment regimen (three more treatments to go). Very impressed with the program and staff! Their mission - Wholeness of Man - is a true "walk the talk" actualization. They don't just care for the disease, but rather care for the person! - Mind, body and spirit focus.
Proton therapy is fulfilling its promise
By: dailypress.com (December 3, 2010)
The best-kept secret in cancer treatment is gaining widespread attention in part from local news at Hampton University.
When the Hampton University Proton Therapy Institute officially opened in October, it put proton therapy on the map not only in Virginia, but the entire Mid-Atlantic region. It was one of the most important medical headlines of the year. HU joins the ranks of such prestigious institutions as Massachusetts General Hospital, M.D. Anderson Cancer Center, the University of Pennsylvania and Loma Linda University Medical Center, plus four other operating proton centers nationwide.
Now comes the Mayo Clinic, one of the most respected medical facilities in the world, adding its name to the proton community. The Mayo Clinic just announced it intends to develop and build not one but two proton centers — an investment estimated at $370 million — on its campuses in Rochester, Minnesota and Phoenix, Arizona.
NAPT Responds to "Running a Hospital" Blog by Paul Levy, CEO of a large Boston Hospital: Protons Killing Cancer and Our Budget
November 9, 2010
By Leonard Arzt
National Association for Proton Therapy
Silver Spring, MD
Paul Levy's opening declaration about proton therapy being an effective modality for treating patients and killing certain types of cancer cells is on the money. Speaking of money, he claims $1.5 billion has been "sunk" (an interesting word to say the least), into building proton centers that he admits is a "valuable resource." I say its money well spent to save lives and provide far better quality-of-life outcomes for cancer patients compared to his own IMRT machine. Levy states Medicare pays twice as much for a round of protons vs. X-rays is off the (proton) mark. The Medicare cost for prostate cancer, for example, is $50K for protons and $42K for IMRT, the most commonly used radiation therapy technique.The question is: Which modality is less harmful and best serves his patients? Or, what course of action would he take for himself? I think I know the answer to that one. Not to mention, as he fails to note, the decided advantage proton therapy has for various pediatric cancers. As the NAPT map illustrates, there are only nine operating proton centers in the U.S. Assuming there were 15 treating at full capacity, they would only be able to treat 1-2% of the entire radiotherapy population in the country.That's hardly a blip on the total health care landscape. It is interesting to note Levy likened President Eisenhower's military-industrial complex warning to a so-called "health care-finance industry complex." Well, it was Eisenhower who created the "Atoms for Peace" program that lead the way toward important medical breakthroughs in nuclear medicine and radiation technologies that we use today --such as proton beam therapy.
Note: Dr. Andrew Lee of M.D. Anderson Cancer Center and John Frick of ProCure Treatment Centers contributed to this response.
Editorial: Hope in Hampton and One Man's Vision, Passion and Legacy
By: dailypress.com (October 23, 2010)
The event was very high tech — and what's more high tech than a beam of subatomic particles? But the real story at Thursday's grand opening of Hampton University's new Proton Therapy Institute wasn't about technology but about humanity. Amid all the science, there was a big measure of emotion.
The governor was the keynote speaker. The president of Hampton University was the master of ceremonies. The speakers included men of medicine and science with impressive credentials. But Jacob was the scene-stealer.
Don't Let Them Cut You, Man!
By: Billy Glad, Saint Joseph Michigan
writer, film maker, photographer
Open Salon.com (June 9, 2010)
When I found out my friend had been diagnosed with prostate cancer, I wanted to say: Don't let them cut you, man. I don't know anybody who is glad they had surgery. I never heard of anybody who is glad they had surgery. Resigned to it, maybe, but not really glad.
Director of Pediatric Radiation Oncology at Mass. General
Director of Pediatric Radiation Oncology at Mass. General Responds to CBS Evening News Proton Piece
By Torunn I Yock, MD MCH
June 4, 2010
How wonderful that CBS embarked on a story of proton radiotherapy and its utility in children. So often the press on proton radiotherapy focuses on patient populations where the benefits of it are less obvious. Protons are likely to make the biggest difference in minimizing side effects of treatment in the pediatric population and we are actively generating the clinical outcomes data that support that assertion. (In fact, I am at ASCO now about to present the clinical outcome data on our first prospective trial in children with medulloblastoma.)
NAPT Comments on CBS Evening News Story on Proton Therapy Fights Brain Tumors in Children
By Leonard Arzt, Executive Director
As strongly noted by others already, calling proton therapy for pediatric patients a "new therapy" is off the (proton) mark. Proton therapy has been used effectively to treat kids diagnosed with brain tumors for more than two decades at two proton centers and is available at all 7 operating proton centers around the country. At the same time, I commend CBS for bringing proton therapy to the public's attention through the heart warming story of two-year old Addison Keegan.
More than a quarter of a million men in the United States are newly diagnosed with
prostate cancer each year. They deserve the best and most appropriate treatment they can get. Instead, many rush to embrace treatment methods that may not be the best for them.
A recent AMA study showed that prostate cancer patients often opt for inappropriate or unnecessary treatment by practitioners touting their own specialties while disparaging or dismissing others. Furthermore, the psychological drive to get rid of the cancer as quickly as possible often leads patients to hasty decisions to embrace more drastic measures than their conditions warrant.
My own experience was typical.
Brain Tumor Survivor Treated with Proton Therapy 26 Years Ago Tells NAPT He's Doing Great
By Jonathan Steinberg
My name is Jonathan Steinberg. I am writing this email to the NAPT Proton Community forum to let you know that I have survived with a Chordoma brain tumor since it was diagnosed 26 years ago. I attribute this success to Proton Beam Therapy.
In 1983 at the age of 27 I was presented with the fact that I had an inoperable brain tumor. My family and I made many visits to doctors and hospitals here in the United States and Canada. Through this process we were told that the best chance for my survival was to go to Massachusetts General Hospital and the Harvard Cyclotron where the doctors were using a new procedure called Proton Beam Therapy. They were using an old proton cyclotron built in the 1940's located on the Harvard University campus in Cambridge to experimentally irradiate Chordoma brain tumors, eye tumors and prostate cancer. I flew to Boston shortly after and met with the doctors. Following an evaluation it was determined I had less than a year to live, and that I was a candidate for their experimental program.
My wife and I moved to Boston. I was operated on October 17, 1983 and began Proton Beam Therapy on October 31, 1983. This lasted until December 30, 1983. My wife and I left our home, our family and our friends for the chance to beat the tumor. I had to put my business on hold and my wife left her job.
If you are in need of a spokesperson for PBT I would be happy to help. It would be an honor to give back in a way to help others. I want people to know I'm doing great and expect to be around for a long time.
Have a happy and healthy New Year.
Patients know value and power of proton therapy
By Leonard Arzt
National Association for Proton Therapy
Silver Spring, MD
Dr. Richard Feldman's column, "Free-market principles don't necessarily apply," Dec. 15, missed the proton point. Indeed, proton therapy is marginally more expensive. However, the vast majority of the nearly 10,000 prostate patients treated in the United States since 1990 offer no apology for seeking the best possible treatment for their cancer given their uplifting quality of life outcomes. As for a dozen proton centers "in development,'' that's debatable. There are only six operating proton centers with another about to open next month. There are only two centers under construction that have poured miles of concrete. Proton therapy amounts to less than 1 percent of the radiation patients treated in the United States. It's a drop in the health-care bucket. Is it a good value for the money? Just ask thousands of former prostate patients or the parents of hundreds of pediatric patients.
Using logic that could just as easily be applied when considering a toddler, the federal government damned proton therapy on Sept. 14 with a report that brands the cancer treatment as lacking evidence of effectiveness and safety.
In your September/October 2009 issue in his article entitled, "Surviving Prostate Cancer," Jay Griffin leaves his readers wanting more and leaving out information on what is probably the best treatment currently available for prostate cancer.
The author mentions that there are two main treatments: surgery and radiation. Then he goes on to discuss external beam radiation. Here is where he makes his major lapse - he lumps photon radiation (x-rays) with proton beam therapy as if they are basically the same thing with the same results and the same side effects. This is so untrue.
I say all this because I am a prostate cancer survivor having had proton beam therapy at Loma Linda University ProtonCenter in Southern California back in 2006. What the author failed to do was due diligence in his research for his article and thus did an injustice to his readers.
I did extensive research and found out that the advantage of proton beam therapy is that your chances of having the two major side effects: incontinence and impotence are greatly reduced if you have proton beam therapy. And this proved to be true for me. I suffered from neither of these two major side effects. The reason is that proton beam therapy is a highly targeted form of radiation using protons that enter your body at a low level and then peak at the site of your cancer, your prostate. Then the radiation stops - it does not continue as it does with x-rays thus affecting other parts of your body.
For a lot more information on proton beam therapy and a comparison of it to the other various treatments available, I suggest you read Robert Marckini's best selling book: You Can Beat Prostate Cancer and You Don't Need Surgery To Do It. It is available on his website: www.protonbob.com and also on Amazon.com. I am also willing to share a lot of information and my experience with any man who is diagnosed with prostate cancer. I can be reached at firstname.lastname@example.org.
Allan Kaufman Owings Mills, MD 21117
I am miffed that once again proton treatment is in the news and being cast in a negative light along with Senator’s Kennedy’s death. Somehow naysayers have twisted a story saying Senator Kennedy’s proton treatment for his brain cancer was unwarranted and experimental. If you were a legendary Senator and bore the name Kennedy, would you not seek out the best treatment available to try to treat your deadly cancer? Of course you would and that is what the late Senator Kennedy did. Senator Kennedy was known for his compelling stance on healthcare issues. Of course, first he selected one of the top neurosurgeons at Duke then he selected the best radiation treatment available in the U.S.: proton treatment.
The physicians at Harvard are considered top experts in their field and are recognized around the world for their superior cancer programs. His doctor team determined together with their patient, Senator Kennedy, to treat his cancer with protons as they considered it the best medical option they could provide under the Senator's severe circumstances. From what has been reported, Senator Kennedy's tumor was among the most aggressive and fatal types of cancer. For him to have survived 15 months from diagnosis and remain a vibrant participant in his work is actually quite remarkable. Most glioma patients at Senator Kennedy’s age (76) are lucky to live another 6-12 months. There is no doubt that proton therapy achieved the goals of his physicians: minimal side effects during and after treatment and more quality days for him and his family.
The same choice is needed for all cancer patients – not just the affluent and easily recognized. The same choice is needed for all pediatric cancers. Harvard has released many new studies that show the chance for secondary cancer is reduced up to 50% when protons are used on children versus traditional radiation. Children are still growing. They are highly susceptible to deficit late effects from radiation hitting non-tumor healthy tissue especially in the brain. The dose to healthy tissue is minimized with protons. Senator Kennedy knew this information and that’s why he got it. Now let’s help our kids get it too.
Executive Director& Founder
Pediatric Proton Foundation
Dr. Marc Sircus writes in Food Consumer on Prostate Treatment Choices "the latest treatment, called proton radiation therapy, can run $100,000 and involves a proton accelerator," and so on. Where did he get that erroneous number? Perhaps from a recent incorrect NY Times article? To set the record straight: Medicare reimbursement for proton therapy for prostate, for hospital based services inclusive of physician charges is less than $40,000. As he knows, there are "charged" dollars and "reimbursed" dollars. While proton therapy is a bit more expensive, our patient satisfaction rates speak for themselves. Protons long term value for these men is priceless. Far fewer men become incontinent or impotent, or end up suffering serious side side effects.
The use of proton therapy for prostate cancer is well studied and the largest randomized study looking at high-dose external beam radiation therapy published in the U.S. actually used proton therapy. The cancer control rates with the higher doses of proton therapy in this study were >91%, which exceeds even the best single institution retrospective experiences. (JAMA 2005 with correction 2008).
If a drug had a >90% cure rate in cancer, it would be adopted without question but we are facing an uphill political battle due to the perception of cost. What's more interesting is that the patient reported quality of life between the low dose and high dose arms were not significantly different when proton therapy was used (ASCO 2007). No similar data exists for other radiation modalities.
We've also published an analysis comparing IMRT vs. Protons in prostate cancer and the potential impact on 2nd radiation-associated malignancies. We found that proton therapy may decrease the rates of 2nd radiogenic cancers by up to 30-40% compared to IMRT. (Fontenot et al. IJROBP 2009). This is corroborated by the clinical experience at Mass General: When they reviewed their 2nd cancer rates with protons, it was significantly lower than the national average with x-rays, and interestingly, the patients who received proton therapy alone (not mixed x-rays and protons) had no 2nd malignancies. (C.Chung ASTRO 2007)
Proton therapy is not only useful for the "rare" cancers (e.g. children), it also has a long clinical track record treating the number one cancer killer in the America…lung cancer. There have been many clinical papers showing the benefit of proton therapy for this disease not only in terms of control rates but also decreasing treatment-related toxicity. We also are currently conducting a randomized trial comparing IMRT vs. Protons in locally-advanced lung cancer.
There is also an issue of how fast these centers can actually be built. These centers are labor intensive and take time…even if everything goes correctly, I would estimate only 3 centers could be built every 5 years. Furthermore, even if we had 20 proton centers in the U.S. we would still only have the capacity to treat <3% of all the patients that need radiation therapy. In terms of the fiscal impact to the U.S. healthcare expenditure, that's a "drop in the bucket".
Our center and others like us are working tirelessly to improve the state of cancer therapy for our patients with these tumors as well as others. Unfortunately the lay-press has not been supportive in that effort and has compounded the obstacles we face. I work 12-16 hours a day and my salary (which is fixed) is <30-40% of my counterparts in private practice (including some who work for Uro-rad type IMRT practices). No radiation therapy center (academic or community-based) will remain viable without treating certain common cancers (e.g. prostate and breast)….that's reality…I'm not saying that makes it "right", but we are trying to make a difference in many different cancers.
Just to clarify:
As you know there are "charged" dollars and "reimbursed" dollars. If you look at Medicare reimbursement rates for IMRT vs. Proton Therapy (including image-guidance) for 8-weeks of prostate cancer treatment it's about $24K vs. $39K. While proton therapy is more expensive…trust me…we spend a lot more time & effort to ensure that it's done right compared to most IMRT-based practices, and I think our patient-satisfaction rates would speak for themselves. So while it might be more expensive, it's a good value. Surgery is a viable option for many men, but carries an increased risk of urinary leakage and diminishment in erectile dysfunction compared to radiation (New England Journal of Med 2008). Furthermore, a portion of these men will require post-operative radiation for positive surgical margins or extra-prostatic extension.
I hope these comments were somewhat useful and thank you for your time and interest. Please do not hesistate to contact me with any additional questions.
-Best regards, Andrew
Andrew K. Lee, MD, MPH
Director, Proton Therapy Center
Department of Radiation Oncology
M.D. Anderson Cancer Center
I read your article on health reform in the July 7 issue of the New York Times and feel compelled to reply.
I’m a prostate cancer patient currently undergoing a course of conformal proton beam therapy. I chose the option based on extensive research, comparing the relative advantages and disadvantages of alternative therapies -- and their costs. I became totally convinced that proton beam therapy is the best choice. Now, two-thirds of the way through the course of therapy, I am even more certain.
I’m one of about 150 patients, ages 39 to 91, currently being treated at Loma Linda University Medical Center, where they have successfully eliminated cancer using proton beam therapy with more than 14,000 prostate cancer patients. Proton beam therapy currently is being used to treat 44 different kinds of cancer at the medical center.
Many of my fellow prostate cancer patients here are physicians, physicists and other scientists who are highly knowledgeable about and have studied the alternatives. They reached the same conclusions that I did about the outcomes and superior side effects profile of proton beam therapy. I have met with dozens of them, and not one is having any significant side effects of treatment. This stands in stark contrast to the typical horror stories of those who submit to surgical and conventional radiation therapies. Hospitalizations, post-surgical infections, lifelong urinary and bowel incontinence, impotence – these hardly are trivial. They are not, as you stated at the end of your article, a simple matter of Medicare taking care of diarrhea.
It was unfortunate that you chose an infectious disease physician as an expert to quote when there are so many physicians available who have done research on the cost and efficacy of protons for prostate and other cancers. The quote fed the premise of your commentary, but did not reflect what researchers are consistently reporting.
When scientists and physicians use proton beam therapy for brain tumors or eye malignancies or pediatric cancers, it’s reported as being heroic and miraculous. But for prostate cancer, perhaps the disease is just too common. The cost argument must take into consideration that most of us are patients who have 20, 30 or 40 disability-adjusted life-years remaining. With proton therapy, we are able to live out lives without the consequences and costs driven by the side effects of radiation, IMRT, and other alternatives. Decisions need to go beyond what economists theorize is being most expedient in the short term, but rather focus on the best outcomes and long-term costs.
Indeed, proton beam therapy is marginally more expensive. (Although not “often exceeds $100,000” as you reported.) As an economics writer, I would have expected you to consider the costs of a lifetime of aftercare for the resulting chronic diseases and injuries caused by conventional surgical and radiation therapies. Furthermore, the marvels of proton beam therapy for brain tumors, eye malignancies and pediatric cancers might be considerably less economical and available if it weren’t for the greater-volume use of the therapy for prostate cancer.
I offer no apology for seeking the best possible therapy for my cancer. For all of my adult life, I and my current and past employers have paid into health insurance plans so that financial help would be available if and when I needed it. Contrast that to a “public option” in which decisions about my health care may be dictated or rationed by government because the costs are determined to be a liability for taxpayers in the short term rather than taking into consideration the best interests of the patient and the cost of lifetime care as a result of the procedure chosen. You seem to favor the more expedient, dictated care, but if it were your cancer or that of someone close to you, somehow I suspect that you’d suddenly see things differently.
In summary, protons beam therapy can cure prostate cancer with few if any of the side effects that are common and expected with surgery or conventional radiation. If you choose to look into this in more depth, I think you would find plenty of convincing data and scientific research to make you change your mind.
Leonard Arzt, NAPT