Imagine a piece of paper. On one side, draw scientists studying cures for Parkinson's and Huntington's diseases, dementia, the effects of concussions and more. On the other side, draw generous patients and families potentially offering newly deceased human brains for the scientists to work on. But there's no connection between these groups.
There are many choices for donors. Stanford University's Alzheimer's Disease Research Center looks into several sources of cognitive impairment, and scientists aim to follow diagnosed participants over time to learn about dementia's changes.That's roughly what Tish Hevel envisioned when her father, Gene Armentrout, died from Lewy body dementia in 2015. "Our father had always wanted to donate his body, so we knew he would want to donate his brain as well. And we knew scientists needed tissue," she later told the American Academy of Neurology. "But the process of donating was complicated."
"Our father had always wanted to donate his body, so we knew he would want to donate his brain as well."
For one thing, "people didn't realize the need," she tells Next Avenue. "People wanted to do it; they just didn't know how." For another, then and now, many assumed brain donations for research equated to organ donation to living recipients. "It doesn't," she says.
Why People Donate
In 2016, Hevel launched the Brain Donor Project to make that missing connection between prospective donors and researchers. Working with such nonprofit organizations as the Parkinson's Foundation and the Alzheimer's Association as well as hospice groups and social workers, they began educating the public about the need for brain donations and promoting easier ways to accomplish it.
The National Institute on Aging stresses that a diversity of human brains is needed for research — including those that are old and young, completely healthy and diagnosed with a disorder. After all, scientists need control subjects for comparisons.
At Boston University's UNITE Brain Bank, family members often offer the story behind a donation. Shannon Albarelli, widow of Mike Albarelli, told the related Concussion Legacy Foundation that her husband, a college athlete and family man, had died in a fall at 38 after a few years of baffling symptoms. Researchers confirmed that Albarelli suffered from chronic traumatic encephalopathy, or CTE.
So Little Is Understood
Another brain at UNITE came from Rowan Stringer, of Ontario, Canada, a high school rugby player who suffered multiple concussions in one week without telling her parents or coaches. A coroner's inquest concluded the 17-year-old died of "second impact syndrome," which is when someone suffers a second head injury before a prior injury can fully heal. Her death led her family to push for Rowan's Law, which requires annual concussion education for Ontario athletes, parents, coaches and team officials.
And living donors? Once Hevel inspired Don Demers Sr. of Midland, New Jersey, to offer his brain for research, many of his family members signed up, too. Demers Sr. had Parkinson's disease, and "he knew that the brain matter is the most important property for researchers," son Don Jr. told a local TV news interviewer last year, after his father passed. He said that the donor movement "has a spiral effect of increasing research not just for Parkinson's but all these different neurological diseases."
"I want to be the brains behind healing for others," Mike Nixon wrote in the spring 2023 magazine of the University of Texas Health Science Center at San Antonio. Nixon, diagnosed with a super-rare neurodegenerative disease, had already lost his sight and significant movement to the illness.
"I felt a calling to become a research subject," he wrote. "If I were going to make a genuine difference, I needed to find a postmortem home for my brain and spinal cord." So Nixon arranged his donation with the Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases at UT Health San Antonio. After all, he noted, "there is more than cancer and heart disease in the world of medical science."
Your Questions Answered
Because deterioration happens quickly, the key to brain donation for scientific research is speed at time of death. The key to speed is telling relevant parties ahead of time — spouses and relatives, physicians or hospice workers and then the funeral home.
"The best thing to do is to make arrangements, talk with family and keep the 24/7 phone number on hand."
"By the time someone looks at a will or end-of-life documents, it's too late," says Hevel. "The best thing to do is to make arrangements, talk with family and keep the 24/7 phone number on hand."
At death, a responsible party should contact the chosen brain bank within a couple of hours. According to the Brain Donor Project, the brain bank will coordinate with a local facility — often the funeral home — to have an expert remove the brain from the back of the head and transport it to the brain bank; "the body is released to the family to proceed with funeral or cremation." Any visitors will see no sign of the procedure.
Preregister to Donate a Brain
At the family's request, the brain bank may later provide a summary of neuropathological findings — that is, a report on any disease found and parts of the brain affected. Per the Brain Donor Project, often "this post-mortem analysis is the only definitive report of the patient's diagnoses."
If the donor or family wants to donate other organs at death, that can continue as planned, brain banks say. It's important to preregister to donate a brain, though, because other organs go to living recipients; brain tissue goes to laboratories for research purposes. Your organ donor card or the icon on your driver's license does not address brain donation.
Many Choices for Donors
Hevel's Brain Donor Project connects preregistered donors with one of six NeuroBioBanks around the country. All collect and store brain tissue for the National Institutes of Health, the primary U.S. agency responsible for biomedical and public health research.
"One brain can provide tissues for hundreds of studies." 
Several other research institutes and projects focus on one broad category of illness, sometimes to the exclusion of others, often in one geographic area. Though NIH covers the costs for donors, not all do, so ask questions. Many, but not all, provide a specific report on the deceased to families.
Stanford University's Alzheimer's Disease Research Center looks into several sources of cognitive impairment, and scientists aim to follow diagnosed participants over time to learn about dementia's changes. "One brain can provide tissues for hundreds of studies" as well as offering answers to a family's specific questions, according to a Stanford brochure.
Brain-Research Facilities
In Louisiana, one mission of the Tulane University Center for Sport Brain Bank is to learn what contributes to CTE and other trauma-related brain disorders. CTE has gotten much attention in the past decade as sports concussions and related athletic deaths have made news. Eligible athletes and military personnel who register with Tulane may receive a three-day health assessment, comprehensive care plan and connections for further treatment.
Similarly, the Concussion Legacy Foundation (CLF), an international nonprofit based in Boston, supports athletes, veterans and others faced with concussion injuries and CTE; promotes safer sports; and works toward research on CTE in collaboration with the Boston University CTE Center.
The CLF Research Registry has a Brain Donation Registry for pledging a brain for scientific research after death and a Clinical Research Registry for people interested in participating in clinical research into concussions and CTE while they are still living.
As a result of reporting this article, the author decided to donate her brain to science. She did so because she notes the volume of data necessary to draw accurate scientific conclusions. Research progress has been slowed because scientists have had too little material (literally) to work with. People need answers, cures and hope, so she registered as a donor to do her bit to help. She hopes you might, too.

Why You Might Want to Donate Your Brain to Science

Ellen Ryan

As a longtime ballroom dancer, Nancy Ladisky is no stranger to pain.
“I had my first acupuncture treatment thirty-five years ago, and it took away my pain,” says the Santa Rosa Valley, Calif., resident. Over the years, Ladisky has had acupuncture treatments for her fibromyalgia, back pain, neck pain, migraines, gastric problems and more. “Acupuncture helps me with everything,” she says.
Ladisky got regular acupuncture treatments from Dr. Stephen Chee, a dual-licensed M.D. and acupuncturist based in Beverly Hills, Calif., but took four months off at the beginning of the coronavirus outbreak. 
“Without acupuncture, I noticed a ten- to fifteen-fold increase in my pain during that time,” she says. 
When she started back on her treatments, she “felt human again,” and her pain decreased dramatically. 
Chronic Pain and the Pandemic
If you’re one of the 50 million Americans who suffer from chronic pain, the pandemic may have made it worse. 
“This is the very first time in the U.S. that acupuncture has been covered by Medicare."
First, the pandemic shifted health care resources towards intensive care and COVID-19 medical sites. Chronic pain management was considered non-urgent, and elective surgeries and in-person pain management services were temporarily shut down.
Dr. Stephen Chee with Nancy LadiskyKavita Trivedi, an associate professor at UT Southwestern Medical Center in Texas, says neck and back pain has increased for many people during the pandemic, as more people are working from home, sitting more and working on their computers. In addition, stress can also lead to pain, and the pandemic has provided a source of constant worry around health, finances, family and more. 
And, of course, not surprising to most of us over 50, chronic pain affects older people more than younger people. 
If you’re looking for relief from pain, without drugs or invasive procedures, acupuncture is an option.
Pain Relief
During acupuncture, practitioners stimulate specific points on the body, typically by inserting thin needles through the skin.
In its report on acupuncture, the World Health Organization lists over 43 diseases, conditions and symptoms that can be treated with acupuncture, including pain-related conditions such as lower back pain, headaches, neck pain and arthritis.
Now, Medicare Coverage 
Just in time for the pandemic, Medicare recipients got financial relief for acupuncture treatments.
In January, 2020, the Centers for Medicare and Medicaid Services (CMS) announced its decision to cover up to 12 acupuncture sessions in 90 days for Medicare patients with chronic lower back pain or LBP. Eight additional sessions can be added if patients show improvement.

“This is the very first time in the U.S. that acupuncture has been covered by Medicare,” says David W. Miller, dual-licensed as an M.D. and acupuncturist, and founding chair of the American Society of Acupuncturists. “It’s really exciting, and provides even more validity to the practice of acupuncture.”
Why did Medicare decide to cover acupuncture for lower back pain specifically? “Because tons of studies show the effectiveness of acupuncture for LBP,” says Mori West, insurance committee chair of the American Society of Acupuncturists and CEO of ACUCLAIMS, an acupuncture and chiropractic billing service. “It’s also the top diagnosis I see on the claims I process.” 
 “Acupuncture is a game changer, and doesn’t have the side effects of drugs or invasive procedures."
There are some restrictions to the new Medicare coverage, however.
Licensed acupuncturists can only provide this service if they are supervised by medical doctors (M.D. or D.O. designations), physician assistants or nurse practitioners/clinical nurse specialists trained in acupuncture, who then need to process the acupuncture claim. Currently, licensed acupuncturists can’t directly bill Medicare.

Health providers could start billing Medicare for acupuncture for chronic LBP in May.
The Cost of the Acupuncture Treatments

“Each session generally costs between $40 and $150, depending on where you are in the country and what style of treatment you are receiving,” says Miller. 
Dr. Stephen CheeToday, an increasing number of private insurance plans, including Medicare supplemental coverage or Medicare Advantage plans, and policies provided by employers offer some type of acupuncture coverage, says Miller. 
Staying Safe During Treatments
The Council of Colleges of Acupuncture and Oriental Medicine has issued an advisory with best practices for reopening acupuncture offices during the pandemic.
Chee, who treats Nancy Ladisky, takes safety precautions seriously. “Patients call us from outside the building, wear a mask when they’re inside, and we do a temperature screening. Then we walk them to a treatment room, due to our no-waiting room policy," he says. "All staff members wear N-95 masks, use gloves and get regular COVID-19 testing.” 
Chee also minimizes interactions with others outside of work and home, knowing that he works with a group vulnerable to serious illness if they contract COVID-19: 80% of his patients are over 60.
Receiving Medicare Coverage 
Paying out of pocket for acupuncture was worth it, says Ladisky, but now that Medicare can cover her acupuncture costs, she’s delighted.  
“Acupuncture is a game changer, and doesn’t have the side effects of drugs or invasive procedures,” she says.

Neil Olshansky, of Bridgewater, Conn., was diagnosed with degenerative disc disease at the age of 30. Since that time, he has had acupuncture treatments on and off for his back pain. When his acupuncturist, Dr. Mitchell Prywes, told him that Medicare could now cover his treatments, Olshansky exclaimed, “Sign me up!”
Dr. Mitchell PrywesHe gets relief from back pain within 15 minutes after his current acupuncture treatments and can then go back to daily activities, including bending over, moving around and even exercising.
“I’m a big fan of acupuncture,” Olshansky says. “Especially when it’s free and I don’t have any co-pays!”  
Nancy Green, of Baltimore, was in a lot of pain during the pandemic. Her acupuncturist, Tom Ingegno of Charm City Integrative Health, hadn’t been seeing patients for a few months during the outbreak. “When he opened back up, I got my treatments and the pain went away," Green says.

She has received acupuncture treatments from Ingegno on and off for 10 years, for neck pain, sciatica, back pain, arthritis, shoulder pain and hip pain. 
“I never wanted surgery, epidurals or cortisone,” Green says. “And I can’t take non-steroidal meds because I have stomach issues.”
While Ingegno isn’t able to bill through Medicare, Green is one of the 80% of his patients whose insurance covers acupuncture visits. Green’s Medicare Advantage Plan offers unlimited visits with a small co-pay per visit.
“Acupuncture is wonderful,” says Green. “I wish more people would take advantage of it.”


How Acupuncture Can Help With Pain During the Pandemic

Margie Zable Fisher

The term “suspicious findings,” is enough to send women who have had a mammogram into an anxiety attack. It may seem unfortunate for me that I’ve been through this at least three times, but it’s given me valuable knowledge and experience in advocating for my health care. And I believe what I've learned can help other women and men do that, too.
After my annual mammogram in April, I was referred to a more comprehensive diagnostic mammogram and then to a surgeon for a surgical biopsy.
I wasn’t convinced I needed a surgical biopsy, having seen a very similar picture on my mammogram twice before that was biopsied by a needle. Surgical biopsies are open surgeries, while a needle biopsy is less invasive. My research indicated that calcifications might continue to grow in my body for the rest of my life with little threat to my health.
Weighing the Costs
A surgical biopsy would have cost my husband and me at least $4,000 out of pocket, given our high deductible and co-pay through my husband’s employer-sponsored health plan. The fee for the outpatient operating room alone was $6,900. That doesn’t add in the surgeon’s fee, the anesthesiologist, the pathologist’s report and any additional hospital fees.
I wasn’t afraid to seek a second opinion through another hospital system. The larger system, about 15 minutes further, accepted our insurance, and I confirmed our plan does allow for second opinions.
The second surgeon, who had been exclusively a breast cancer surgeon for 20 years, said he didn’t feel it was anything to be concerned about. Nevertheless, he decided to consult his radiology department for their opinion.
An Even Bigger Savings
They agreed a needle biopsy would suffice. Our out-of-pocket expenses would still be about $1,200. When I went for the needle biopsy, the radiologist entered the room saying he only thought there was a 5 percent chance of it being cancer. When I told him the out-of-pocket cost for this procedure, we discussed taking a wait and see approach, which he said would neither make the condition worse or change my treatment options if it turned out to be cancer.
After undergoing another diagnostic mammogram, which showed no change after three months in the “piece of rice” (as I like to call it), I decided to pocket my $1,200 and wait and see.
Knowing What to Question
“I can’t tell you how many times I hear this happening from patients,” says Dr. Paula Muto, a vascular surgeon and founder of UBERDOC, an app that allows member patients access to specialists. “Doctors will always be conservative, fearing a lawsuit if they miss cancer or other serious illness.”
Muto says I did the right thing by doing my research, seeking a second opinion and asking what would happen if I waited.
“More doctors should be looking at the bigger picture, trusting their instincts and telling patients what would happen if they take a wait and see approach,” Muto says. “Especially now that insurance is shifting more costs to the patient.”
John Gallagher of the Washington Health Alliance in Seattle cites a shocking statistic from the 2011 Dartmouth Institute for Health Policy and Clinical Practice study: Up to 30 percent of Medicare clinical care spending is “unnecessary or harmful and could be avoided without worsening health outcomes.”
The Alliance partners with the Choosing Wisely Campaign, an initiative of the ABIM Foundation (American Board of Internal Medicine) and Consumer Reports to help patients start a dialogue with their doctors about avoiding unnecessary tests, treatments and procedures.
Smart Questions to Ask
Gallagher says the Alliance recommends patients ask these questions when they are referred for tests and procedures:
Do I really need this test or procedure?
Ask your doctor to tell you if you really need the treatment, test or procedure and how it will make a difference.What are the downsides?
Your doctor should clearly outline the risks of the treatment, test or procedure so that you can balance them with the potential benefits.Are there simpler, safer options?
You should know all your choices to determine the right one for you.What happens if I do nothing?
Sometimes, doing nothing can be an option to consider seriously.How much does it cost?
Consider your out-of-pocket costs. A simpler treatment may cost less money and be just as effective.More Cost-Saving Measures
Additionally, Gallagher says you can do other things to avoid skyrocketing out-of-pocket expenses.
“One of the most basic things is not to use the ER unless it is really an emergency,” he says. “Most people go for things such as UTIs, back pain, pink eye and respiratory infections, when those things could be taken care of in an urgent care clinic.”
Gallagher also says if you and your doctor agree to a procedure, don’t let medical professionals determine where you will get your care. Instead, do a little research and you might save some money.
“If you need a colonoscopy and your doctor refers you to a hospital, there could be a facility fee. If there is a diagnostic center, it’s typically less expensive,” says Gallagher.
If you have an employer-sponsored health plan, you might be able to compare costs of one facility over another by using the cost calculators. “Most plans have them and most are underutilized because people don’t know they exist,” says Gallagher.
Finally, Gallagher says the old adage that an ounce of prevention is worth a pound of cure holds true. He said people should be having wellness exams, especially if they have pre-existing conditions such as diabetes and other chronic ailments.
“Things are a lot less expensive and typically are a lot less grief if [they] are monitored and taken care of early rather than being allowed to develop into a problem,” he says.
Be Confident in Your Doctors and Your Decisions
Would my decision to wait and see be right for everyone? Probably not, but given my history and confidence in my second medical team, it was right for me.
The trick is doing research, understanding your body and medical history and knowing which questions to ask of your health care professional. That way, you can make the choice that’s best for you, your health and your peace of mind.


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Kerri Fivecoat-Campbell

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