Health

Those living in older homes should be especially cautious about asbestos. Stock photo

By Charles MacGregor

Last year, Congress passed bipartisan legislation to amend the Toxic Substances Control Act, giving the United States Environmental Protection Agency a few new tools to help better regulate chemicals and protect human and environmental health. Among those tools was a requirement to have ongoing risk evaluations for chemicals to determine their risks to people. When the agency released its list of the first 10 chemicals slated for review, it was a parade of hard to pronounce names that would leave the average person scratching their head, but the list also included a common name with a long history in the United States.

Fifty years ago, when it was in its heyday, asbestos was found in products throughout the home. Vinyl flooring, furnace gaskets and cement, roofing shingles and even crock pots and ironing boards were all known to contain the mineral. Asbestos performs well when it comes to resisting heat and was often included in products used in applications where a lot of heat would be generated. But the material also carries a dark secret in that it’s capable of causing several awful diseases, including asbestosis, a chronic lung disease, and mesothelioma, an aggressive cancer affecting the lining of the lungs.

Mesothelioma is an especially awful cancer because it’s often aggressive and displays symptoms that could be mistaken for a variety of illnesses. By the time it’s actually diagnosed, however, mesothelioma is usually in its later stages when the prognosis is extremely poor and there aren’t many options for treatment. Unfortunately, for many people battling the disease, they weren’t exposed recently, but rather decades ago while working in manufacturing, mining or in the military. Invisible asbestos fibers can become airborne when products are damaged and pose a significant threat of inhalation or ingestion.

When the TSCA was signed into law, asbestos was heavily regulated and its usage has since steadily declined. But when the EPA tried to finally put an end to asbestos in 1989, the final rule banning the material was overturned by the Fifth Circuit Court of Appeals two years later due to a lack of “substantial evidence” despite tens of thousands of pages accumulated during a 10-year study. After the colossal failure to ban asbestos, the EPA didn’t attempt any additional bans using the old TSCA rules.

The reason the asbestos evaluation matters so much is because these amendments to the TSCA are supposed to ease burdens and make it easier for the EPA to react swiftly to regulate and ban chemicals that are too dangerous for people. It matters because there is proposed legislation known as the Regulatory Accountability Act that would, in essence, resurrect some of the same barriers intentionally removed from the regulatory process. In the case of asbestos, this could delay a possible ban by years while the agency sifts through red tape and challenges from industry lobbyists. A massive cut in funding to the EPA would severely cripple the agency and force it to do more with less, when it can barely keep up with the work it does now. And President Donald Trump’s (R) “2-for-1” executive order, which forces agencies to remove two rules for every new one added without any additional costs, is a direct assault against our health. It forces agencies to pick and choose what rules get enforced and puts the balance sheet above our safety.

The EPA is under a lot of stress, but we also need to understand that the failed asbestos ban nearly 30 years ago is a cautionary tale. If there’s any hope of seeing the material banned, the stars have to align. There’s still an air of cautious optimism, but the deck is heavily stacked against it.

Visit www.mesothelioma.com for more information.

Charles MacGregor is a Community Engagement Specialist with the Mesothelioma Cancer Alliance. He works to raise awareness about environmental policies related to the continued use of asbestos.

Local family goes from organizing basket raffles to hosting international symposium

Many battling the autoimmune disease APS Type 1 and their families, above, attended a symposium at Stony Brook University organized by Dave and Sherri Seyfert of Stony Brook. Photo from Sherri Seyfert

By Rita J. Egan

When their son Matthew, now 17, was diagnosed with Autoimmune Polyglandular Syndrome Type 1 11 years ago, Sherri and Dave Seyfert’s world was turned upside down.

The diagnosis led the Stony Brook couple to join the cause to find a cure for the rare autoimmune disease that affects 1 in 2 million people in the United States, and the results of their efforts culminated recently with the Second International Symposium on APS Type 1 at Stony Brook University July 13 through 15, an event they organized and hosted.

“Each time we have a hospitalization or emergency room visit or are in ICU, for the most part we learn something that will keep us out of there for that particular thing next time.”

—Dave Seyfert

The Seyferts with Todd and Heather Talarico of New Jersey founded the APS Type 1 Foundation with the main goal of making physicians more aware of the rare disorder. In the last decade, the families have raised $500,000 for research through fundraising events, which includes basket raffles organized by the Seyferts at the Setauket firehouse on Main Street.

The Seyferts said the basket raffles were always popular thanks to the support of local businesses and residents, and their fundraising success led to the hosting of the July symposium that gave researchers an opportunity to share information. It also provided patients and their loved ones a chance to find a much-needed support system.

Attendees traveled from all over the country as well as Ireland and South America to share their experiences. The couple said life after a diagnosis can sometimes be lonely for families.

“The symposium gave [families] the opportunity to share, to be able to provide each other with support and also listen to the researchers giving them hope that there’s a lot of research going on out there,” Sherri Seyfert said.

The Seyferts said “there are a lot of moving pieces” when it comes to APS Type 1, because the body has trouble metabolizing Vitamin D, which helps in the process of providing calcium to bones and muscles, including the heart.. A patient can experience various symptoms including cramping, bone mass problems and an irregular heart rhythm. However, a triad of disorders identifies the disease: adrenal insufficiency (Addison’s), hypoparathyroidism, and Candidiasis.

The Seyfert’s son Matthew was diagnosed when he was six years old. Photo from Sherri Seyfert

“So everybody is actually a little bit different as far as what conditions they have, even though they’ll share three things,” Dave Seyfert said. 

He said the disease overall is manageable, even though patients can develop something new every decade of their life.

“Each time we have a hospitalization or emergency room visit or are in ICU, for the most part we learn something that will keep us out of there for that particular thing next time,” the father said.

He said the couple chose the university to recognize the contributions of Stony Brook Children’s Hospital  to the community and their quick diagnosis of Matthew when he was six years old. At the time he was experiencing excessive fatigue and suffered a seizure in kindergarten. His father said it took 48 hours for the team at Stony Brook to diagnosis his son. It can sometimes take years to identify the disease in a patient.

The couple said the symposium included a section for children and teenagers to interact separately from adults. Matthew attended the event and assisted in escorting guests and served as a microphone runner during the Q&A.

Dr. Andrew Lane,  professor of clinical pediatrics in the Division of Pediatric Endocrinology at Stony Brook Medicine, and Dr. Mark Anderson, director of University of California, San Francisco’s Medical Scientist Training Program, were among the speakers at the symposium.

“I think that [the Seyferts] are just a fantastic example of encouraging people to believe that for whatever medical condition or other condition in the world they are interested in fixing, even small things can make a difference.”

—Dr. Andrew Lane

“I thought it was really uplifting,” Lane said. “It was really great to see all the families supporting each other. It was also great for the physicians and scientists in the audience to interact, and informally and formally hear each other’s work and help recognize what areas need further work.”

Anderson, who met the Seyferts at the first symposium in Toronto, Canada in 2015, said there is hope for those diagnosed with APS Type 1. He said with stem cell transplants, the thymus, a gland that sits in front of the heart and plays a part in APS Type 1, may possibly be reprogrammed.

“That’s the type of thing that families want to know that someone is working on the problem,” Anderson said.

Lane, who was part of the team that diagnosed Matthew, said the symposium was the perfect opportunity for families to raise concerns directly to internationally recognized researchers in the field, and he is amazed that the family went from organizing basket raffles to hosting a symposium.

“I think that [the Seyferts] are just a fantastic example of encouraging people to believe that for whatever medical condition or other condition in the world they are interested in fixing, even small things can make a difference and sometimes turn into really big things,” Lane said.

Matthew was too shy to comment on the event, according to his mother, but she said the whole family was left with hope after the three-day symposium.

“People were thanking me, and my response always was it’s an honor to be able do this for everyone,” his mother said.

For more information about APS Type 1 and future events, visit www.apstype1.org.

U.S. Sen. Chuck Schumer said there is need to increase the PPP loan funding, but he and Republicans have disagreed how. File photo by Kevin Redding

With a dramatic thumbs down gesture from U.S. Sen. John McCain (R-Arizona) in the middle of the night July 28, the GOP-backed health care bill was effectively killed in the United States Senate, leaving the future of health care in the country, state and county a mystery.

“First: I want to thank Sens. [Lisa Murkowski (R-Alaska)], [Susan Collins (R-Maine)], and McCain for showing such courage, strength, and principle.”

— Chuck Schumer

As a result of the vote, the Affordable Care Act, or Obamacare, remains the law of the land for the time being, despite rhetoric from President Donald Trump (R) suggesting the system is on the verge of collapse. In New York, a universal health care bill progressed past the state assembly and has been in committee since June 2016, awaiting state senate approval and a final signature from Gov. Andrew Cuomo (D). A New York State health care bill would supersede federal law.

“First: I want to thank Sens. [Lisa Murkowski (R-Alaska)], [Susan Collins (R-Maine)], and McCain for showing such courage, strength, and principle,” U.S. Sen. and Senate Minority Leader Chuck Schumer (D-New York) said on Twitter July 28. The three Republican senators voted in line with the 48 Democrats to effectively kill the bill, despite the GOP majority. “To everyone who called, tweeted, emailed, and raised their voice in any way: thank you. Your stories matter. But we are not celebrating. We are relieved — for the millions of Americans who can keep their insurance and breathe a little easier. Now, it’s time for the Senate to come together in a bipartisan way to fix the problems that exist in our health care system. We can stabilize the markets through funding cost sharing reduction and creating reinsurance programs, which keep premiums, deductibles down.”

U.S. Rep. for New York’s 3rd Congressional District Tom Suozzi (D-Glen Cove) released a proposal July 31 with the Problem Solvers Caucus, a bipartisan group of legislators which Suozzi serves as the vice-chair of, that would “stabilize the individual insurance market,” in the wake of the vote, according to a press release. The plan would create a dedicated stability fund to reduce premiums and limit losses of coverage, repeal the 2.3 percent medical device sales tax that is on all medical device supplies, provide clear guidelines for states that want to enter into regional control of their health care and create more options for customers, and more.

“Americans are desperate for Democrats and Republicans to work together to try and tackle the challenges our country faces,” Suozzi said in a statement. “The Problem Solvers Caucus, by proposing this major bipartisan first step, is like an oasis in a desert of dysfunction. We still have much more to do with health care and other issues and we hope our colleagues will join our efforts in this spirit of goodwill and compromise for the common good.”

“The Problem Solvers Caucus, by proposing this major bipartisan first step, is like an oasis in a desert of dysfunction.”

— Tom Suozzi

The New York State Assembly bill for the 2017-18 session, which is currently in committee, would establish The New York Health Act, to create a single-payer health care system.

A single-payer system requires a single-payer fund, which all New Yorkers would pay into to cover health care costs of an individual, instead of through private insurers. In a single-payer system every citizen is covered, patients have the freedom to choose their own doctors and hospitals, and employers would no longer be responsible for health care costs. Suozzi attended a March rally in Huntington in support of a single-payer system for New York.

The U.S. Senate version of the health care bill passed by the House of Representatives in May  would have resulted in drastic cuts to Medicaid funding for New Yorkers. According to the Kaiser Family Foundation, a nonprofit organization established to deliver health policy analysis to the public, nearly $92 billion in funding would be cut from New York’s Medicaid expansion dollars between 2020 and 2026.

The predominantly Republican support for the repeal of Obamacare stems from expensive premiums and an individual mandate requiring the purchase of health insurance for all Americans with a fine for noncompliance.

The U.S. Congressional Budget Office was no more optimistic about the GOP health care bill than the Kaiser Family Foundation. A July 20 report from the CBO on one of the many versions of the now-failed senate bill predicted 17 million Americans would be uninsured by 2018 had the bill passed, in addition to increases in premiums.

Meghan Chiodo gets to know her new service dog Polly, who was given to her thanks to Canine Companions for Independence. Photo by Jenna Lennon

By Jenna Lennon

After interviews, reference forms, applications and a year and a half of waiting, 10th-grader Meghan Chiodo from Greenlawn was finally able to meet her assistance dog, Polly.

Meghan and Polly were introduced thanks to Canine Companions for Independence Wednesday, July 26, at the nonprofit’s headquarters in Medford.

Polly, a black female Labrador-Golden Retriever will help Meghan with many different tasks aside from becoming a loyal and loving companion. Meghan was born with spina bifida and has little to no feeling or control of her legs from her knees down, so Polly will be especially helpful with giving her all the assistance she needs.

“Meghan is sort of an ideal candidate in the sense that she’s in that age where she wants to be more independent and the dog can really help provide that to her especially as she’s getting into her later years of high school,” Jessica Reiss-Cardinali, the participant program manager for the Northeast Region of Canine Companions said in an interview.

Meghan said Polly will help with tasks like “bringing my laundry from the living room to my room … the dog can carry something or I can carry it and the dog can open the door,” she said at the event. “I think those are the two [commands] I’ll probably use the most.”

Meghan’s mother Kerri said Polly will be a great assistance around the house.

“The wheelchair is now in our home, so she doesn’t have her hands free always,” her mom said. “So the dog will provide an extra set of hands for her for a little more independence and companionship. That’s going to be a big one. She’s one of four children. She’s the youngest, two are leaving off for college, so it’s nice to have a buddy.”

Canine Companions, the nation’s largest provider for trained assistance dogs, is an organization founded in 1975 aimed at providing service dogs, hearing dogs, skilled companions and facility dogs to people with disabilities free of charge. The Northeast Regional Center for CCI opened in Medford in 1989 and has since placed 861 Canine Companion teams together.

Golden Retriever, Labrador and Golden-Lab puppies are trained by volunteer puppy raisers who provide them with a safe and happy living environment, a healthy diet, obedience training and socialization.

When they are about a year and a half old, the puppies then receive professional training at a Canine Companion training center for six to nine months, learning 40 advanced commands. Then, they are matched with a child or an adult with a disability.

“Four times a year we invite people that are on our waiting list to come, and they stay with us here in Medford,” said John Bentzinger, the public relations and marketing coordinator for the Northeast region of Canine Companions. “They stay at our facilities, and we call it ‘team training.’ The dogs are already fully trained, but we’re teaching the people how to use the commands and how to care for the dog.”

Participants spend the first few days getting acquainted with the different dogs and with the commands necessary to interact with them.

On the third day of the two-week program, the matches are revealed to the participants. Matches are based on the interactions that trainers and program coordinators see during the first few days of the program between the dogs and the participants, as well as what the participants need from the dogs.

“It’s like a jigsaw puzzle where everybody has to fit together,” Reiss-Cardinali said. “We like to say this is like a 10-year commitment, so if you’re going to sign on for 10 years, we’d like it to be something that’s going to work for you. It’s a very happy time, and for the staff too. We’re all crying in the room because there’s a lot of work that goes into that 20 minutes.”

As for the matchup between Polly and Meghan, Reiss-Cardinali said it was a no brainer.

“They’re sort of at the same stage in life,” she said. “Polly is just coming out of young adulthood so I really feel like as Meghan grows, it will be a really nice way for them to grow together.”

By the day that the matches are revealed, participants in the program have already learned several commands to use as part of their team training with their new companion.

“We did sit, down, heel, let’s go, side, release, wait, kennel and okay,” Meghan said. “That’s it so far.”

Her mother said that’s no small feat.

“That’s it so far, but that’s a lot in two days … I think today we get six whole new commands, so that’s a lot,” she said. “The instructors are incredibly patient. You’ve got so many different people with so many different needs, and they’re accommodating all of us. I’m really impressed with this whole facility and what they do here. It’s incredible. These dogs are amazing.”

Meghan and Polly and the rest of their Team Training Class will graduate Aug. 4 at 2:30 at the Genesis Center in Medford.

To learn more about canine companions visit www.cci.org.

Leukemia survivor Aubri Krauss collected Band-Aid box donations for Stony Brook University Hospital’s hematology and oncology unit. Photo from Darcy Krauss

By Jenna Lennon

Three years ago, Jericho Elementary School student Aubri Krauss decided to start a Band-Aid drive to benefit Stony Brook University Hospital’s hematology and oncology unit.

She had been diagnosed with leukemia in 2011. At just over 3 years old, she toughed out the treatment, and when finished, decided she wanted to do something to help others.

“[I want to] bring smiles to other kids who are going through what I went through,” she said.

Leukemia survivor Aubri Krauss collected Band-Aid box donations for Stony Brook University Hospital’s hematology and oncology unit. Photo from Darcy Krauss

“We were at the pediatrician’s office, and she saw all the Band-Aids they had and she was like ‘You know what mom? We used so many Band-Aids when I was sick — wouldn’t it be great if we could get a bunch of Band-Aids for all the kids that are still sick?’” Aubri’s mother Darcy Krauss said. “When they have to get their finger pricked, those plain Band-Aids are boring. That was one of the great things for Aubri was she got to pick her own fun, kid Band-Aid.”

Last year, Aubri decided to try something different and hosted a wrapping paper drive for the events that the clinic holds for the children during the holidays.

Aubri decided to return to the Band-Aid drive this year because “she thinks it’s more personal to the kids,” Krauss said. When she began, she hoped to beat her collection of 700 boxes from her previous Band-Aid drive, and she’s done just that, collecting over 800.

“And they’re not all the little 20 packs,” Krauss said. “Some people brought boxes that have hundreds of Band-Aids, some people bought boxes that have 200 Band-Aids in it. So it’s a lot of Band-Aids.”

Middle Country Board of Education member Dina Phillips met Aubri in 2012 when her father was the assistant coach of her son’s baseball team.

“When I met Aubri, she endured countless tests, procedures, chemo treatments and much more, yet managed to do so without ever losing her sense of joy,” Phillips said. “She had to learn what it means to live part of her life in a hospital room, to lose her hair, and to lose some of the freedoms that other kids her age get to enjoy.”

“She endured countless tests, procedures, chemo treatments and much more, yet managed to do so without ever losing her sense of joy.”

Dina Phillips

She said she was blown away by how Aubri did not let her circumstances define her.

“With a maturity far beyond her years, Aubri turned her illness into an opportunity to help other kids like her, and turned her pain into a way to bring smiles to others,” Phillips said. “I am extremely proud of her. I hope we can all do a simple gesture and help her achieve her goal.”

Band-Aid drives were held at Aubri’s elementary school, Raymour & Flanigan Furniture and Mattress Store in Lake Grove, and Stagecoach Elementary School, where Phillip’s son goes to school. The students there decorated the box for a collection at Stagecoach’s 50th Anniversary celebration on June 9th.

“I think when you go through something so hard and you can come out on the other end and be empathetic and understanding … it just makes me very happy and blessed to be her mom,” Krauss said. “Everyone is like ‘she’s so lucky to have you as her mom,’ and I’m like no, I definitely think I’m the luckier one to have her as my daughter.”

New York State Senator Ken LaValle does not approve of the decision

John T. Mather Memorial Hospital in Port Jefferson is establishing a . File photo from Mather Hospital

A Port Jefferson institution established in 1929 is set to undergo an unprecedented change, the likes of which has never occurred during its near-90-year history. John T. Mather Memorial Hospital leadership has signed a letter of intent to join Northwell Health, New York’s largest health care provider, which has 22 hospitals under its umbrella. Prior to the agreement, Mather was one of just two Long Island hospitals unaffiliated with a larger health system. Mather’s board considered affiliation with Stony Brook University Hospital, though ultimately decided on Northwell.

Mather Hospital is set to join Northwell Health. Photo from Huntington Hospital.

“I don’t think it’s a good decision,” State Sen. Ken LaValle (R-Port Jefferson) said in a phone interview. LaValle is a fervent supporter of the university, often publicly spotted wearing a red SBU baseball cap. “For 50 years-plus there’s been a culture in place if people needed tertiary care they would go from Mather to Stony Brook. Stony Brook will still be in place, will still offer services and people still if they choose can go to Stony Brook.”

LaValle said he didn’t know why Mather decided to go with Northwell, and members of Mather’s board declined to discuss specifics of the agreement with Northwell because discussions are ongoing. The changeover could take place as soon as prior to the end of the year.

“I would have wished that the Mather board would have been considerate of the people in their area rather than for whatever other reasons they made this decision,” LaValle said. “I don’t know whether Northwell came in with a bag of cash and that’s why they made the decision; but if they were making the decision based on the people they serve in their catchment area they would have gone with Stony Brook.”

Mather Hospital Vice President of Public Affairs Nancy Uzo, said Stony Brook was considered an option for affiliation and offered an explanation by email as to why it was ultimately spurned.

“I don’t think it’s a good decision.”

— Ken LaValle

“Our goal through this process is to ensure that our communities continue to have access to advanced, high quality care and superior satisfaction close to home and to serve the best interests of our medical staff and employees,” she said.

Mather Board of Directors Chairman Ken Jacoppi and President Ken Roberts declined to comment further through Uzo.

“Our community, employees and medical staff have a deep commitment to Mather Hospital,” Roberts said in a press release. “We chose a partner that would support our culture of caring as well as our future growth.”

Stony Brook University Senior Vice President for the Health Sciences and Dean of the School of Medicine Ken Kaushansky declined to comment on Mather’s decision via email. President Samuel L. Stanley Jr. did not respond to a direct request for comment nor through a university spokeswoman.

In 2016 the American Hospital Association released research suggesting hospital mergers like the one Mather is set to undertake result in cost savings and quality improvements. According to the research, mergers decrease costs due to economies of scale, reduced costs of capital and clinical standardization among other efficiencies. An analysis showed a 2.5 percent reduction in annual operating expenses at acquired hospitals. Other benefits include the potential to drive quality improvements through standardization of clinical protocols and investments to upgrade facilities and services at acquired hospitals, an expansion of the scope of services available to patients and improvements to existing institutional strengths to provide more comprehensive and efficient care.

New York State Sen. Ken Lavalle did not agree with Mather’s decision to join Northwell Health over Stony Brook University Medicine. File photo

Huntington Hospital joined North Shore-LIJ in 1994, which became known as Northwell Health in February 2016. After the merger is official, Mather and Huntington hospitals will be the only Northwell hospitals on the North Shore in Suffolk County.

“Mather Hospital is known for patient-centric care both in the community and throughout the industry,” Michael Dowling, Northwell’s president and CEO said in a statement. “That deeply embedded sense of purpose is the type of quality we want to represent Northwell Health, along with an excellent staff of medical professionals and physicians. Together, Mather and Northwell will play a crucial partnership role expanding world class care and innovative patient services to Suffolk County residents.”

In what some view as a related move, Stony Brook announced in a press release Aug. 1 that Southampton Hospital would become a member of the Stony Brook Medicine health system.

“Today we celebrate a unique opportunity in which academic medicine and community medicine can come together to benefit our entire region,” Stanley said. “We will continue to build on successful collaborations achieved over the past ten years, which have already brought many new programs to the East End, including a robust number of internship and residency programs at Stony Brook Southampton Hospital, and where students enrolled in graduate programs in the health sciences on the Stony Brook Southampton campus can put their training to good use as the next generation of allied health professionals to help address the shortage of providers on the east end and beyond.”

The acquisition will result in new offerings at Stony Brook including a provisional Level 3 Trauma Center, with 24-hour coverage by emergency medicine doctors and a trauma surgeon available within 30 minutes, a Hybrid Operating Room with sophisticated imaging capabilities and a new cardiology practice in Southampton with Stony Brook cardiologists, among other benefits.

LaValle declined to classify Mather’s decision as a “loss” for Stony Brook and added he expects Mather and the university to continue to enjoy a mutually beneficial relationship going forward.

“Stony Brook is close by and they will reach out and still try to encourage both local physicians and people to come to Stony Brook,” he said.

This version was edited Aug. 7 to include comments from Michael Dowling.

Members of the community gather at Jackson Edwards’ Terryville home July 31 to welcome him home from a lengthy hospital stay in Maryland to battle leukemia. Photo by Kyle Barr

By Kyle Barr

After more than four months of treatment battling acute myeloid leukemia, a blood and bone marrow cancer, 11-year-old Jackson Edwards returned home Monday from Johns Hopkins Hospital in Baltimore, Maryland to the sound of a Terryville fire truck honking and the cheers of friends and family.

“I don’t know how to put it — it’s such a wave of emotions,” Jackson’s mother Danielle Edwards said. “We’re happy, finally. Jackson’s a little nervous because he’s so far away from the hospital and he’s thin from the treatment, but he’s happy to be with his people.”

Jackson waives to the crowd assembled at his home. Photo by Kyle Barr

Tired from the long trip and overwhelmed by the number of people who had shown up for the surprise homecoming, Jackson only stood outside for a few minutes July 31, waving to his friends and family before heading back inside. They had taken a 6-hour drive to get back to Terryville from Johns Hopkins.

“[Jackson and his mom] had no idea what was here,” Jackson’s aunt DeeDee Edwards said. She had helped plan the surprise homecoming, and was in charge of keeping the mother and son in the dark. “Jackson was counting the stoplights until we got here, and he was so overwhelmed by all the people who came to support him.”

Though the drive home was long, the real difficulty for Jackson and his family was the more than 100 days he spent in Baltimore fighting the rare form of cancer.. Jackson has always been a charismatic young man, according to his family. He’s a typical 11-year-old — he loves wrestling and football. His favorite comic book and show characters are Captain America and Optimus Prime. In December 2013 Jackson was diagnosed with AML. It was the start of an arduous treatment process that saw Jackson go into remission in May 2014.

Around Christmas 2016, Jackson started to feel sick again, and after taking him to Stony Brook University Hospital, the family learned that the his disease had returned and he had relapsed. In April he was transferred to Johns Hopkins in Maryland where he underwent a long and painful process of chemotherapy in preparation for a later bone marrow transplant. Meanwhile, friends and family worked hard to fund raise and help Jackson’s mother in finding options for his treatment.

Deirdre Cardarelli, a friend of the family, worked hard to help throw the surprise welcome for the Edwards’. For months Cardarelli was co-running the StayStrongJackson Facebook page alongside Jackson’s mom, and she was instrumental in forming a T-shirt drive and an Easter egg hunt to support the family’s travel and medical funds. The Facebook page and all the other social media efforts helped galvanize the local community in its support of Jackson, even those who were not necessarily close to the Edwards’..

Onlookers for the surprise homecoming brought signs of support to hold. Photo by Kyle Barr

“I don’t know the family personally, but our oldest, Michael, is in the same school with Jackson,” said community member Yoon Perrone. “We bought the shirts to support the family and we wanted to be here. I can’t imagine one of our own children having the disease.”

For the bone marrow transplant the family had to find a donor that was as close of a match as possible. Rocco Del Greco, a friend of the family, said he felt a deep need to help the young man and his family once he learned of the cancer’s relapse.

“Since I was not so emotionally connected to their son I was able to channel my anger for what happened to the young man,” Del Greco said. He helped to jump-start a YouCaring page to crowd fund for Jackson, which managed to raise more than $8,000. Del Greco  also managed several bone marrow drives during the search for a suitable donor. From January to early April, Del Greco helped facilitate for almost 1,800 people to test their DNA for matches to Jackson.

Finding a sufficient match was not easy for the Edwards’. Jackson’s mother had a 50 percent match from her own marrow. She served as the donor, and the transplant was successful. After about a month-long recovery, the doctors said he was safe to continue treatment from home.

The process kept Jackson away from school and friends and forced him to endure weeks of treatment, including chemotherapy. Jackson was not able to attend his fifth-grade graduation ceremony from elementary school in the Comsewogue School District, but his older brother Cortez James “C.J” Edwards walked up on stage in his place. Jackson’s mother said that while the treatment process and lengthy hospital stay did get tough, her son powered through it by making new friends.

Members of the community gather at Jackson Edwards’ Terryville home July 31 to welcome him home from a lengthy hospital stay in Maryland to battle leukemia. Photo by Kyle Barr

“He met a whole bunch of new people, because he’s very charismatic, and he stole a bunch of other people’s hearts,” she said.

The transplant has left his immune system weak, and for another eight months Jackson is restricted from coming too close in contact with other people while he heals. This will prohibit him from attending school for several months, but his mother said they plan on continuing his education with tutoring.

Though he said he is excited to eventually go back to school, for now Jackson celebrated a Christmas in July, including a tree and presents surrounding it. He was unable to celebrate Christmas with his family when his cancer relapsed back in December.

According to the United States Centers for Disease Control and Prevention, more than 47,000 people were diagnosed with leukemia in 2014, the most recent year on record with data on leukemia.

Councilwoman Susan Berland stands with the free sunscreen dispenser now at Crab Meadow Beach in Northport. File photo from A.J. Carter

By Victoria Espinoza

One Huntington Town official is determined to have residents covered when it comes to their skin.

Councilwoman Susan Berland (D) received support from her Huntington Town Board colleagues to expand her pilot program and provide sunscreen protection for Huntington residents at 14 new locations in addition to Crab Meadow Beach.

Last summer Berland launched a free sunscreen dispenser program at Crab Meadow Beach after working in conjunction with IMPACT Melanoma, formerly known as the Melanoma Foundation of New England, an organization that provides education, prevention and support for the most serious form of skin cancer.

“The [Crab Meadow Beach dispenser] was a success,” Berland said in a phone interview. “It got a lot of use last year and this year. So I wanted to expand it to 14 other locations.”

For about $1,600, the town will purchase from IMPACT Melanoma 14 additional BrightGuard sunscreen dispensers along with a supply of BrightGuard Eco Sport Sunscreen Lotion SPF 30 for each designated location.

The new dispensers will be installed at Asharoken Beach, Centerport Beach, Crescent Beach, Fleets Cove Beach, Gold Star Battalion Beach, Hobart Beach, Quentin Sammis/West Neck Beach, Greenlawn Memorial Park, Heckscher Park, Ostego Park, Veterans Park, Crab Meadow Golf Course, Dix Hills Golf Course and Dix Hills Pool. The sunscreen is environmentally safe, made in America and Para-AminoBenzoic Acid (PABA) free, according to Berland’s office. The councilwoman said she chose locations based on need and their supervision.

“For example the town pool is where all town camp programs are held,” she said. “I’m willing to bet there are some kids who are not using sunscreen or will forget it and this can help.”

Berland said the reaction to the first dispenser and a melanoma prevention and awareness event she hosted earlier this summer have indicated both been a success.

“I get swarmed at the dermatologists office about how great the first dispenser is,” she said. “People can forget to pack their sunscreen or some people have never even used sunscreen before. It’s just not on their radar. So people are now trying it, it’s a great preventative for the residents.”

According to the Journal of Clinical Oncology regular sunscreen use can reduce the incidence of melanoma by 50 to 73 percent.

According the 2014 report “Surgeon General’s Call to Action to Prevent Skin Cancer,” skin cancer is the most commonly diagnosed cancer in the United States, and most cases are preventable. Melanoma is responsible for the most deaths of all skin cancers, killing almost 9,000 people each year. It is also one of the most common types of cancer among U.S. adolescents and young adults.

Berland is a skin cancer survivor herself and said this issue is very personal to her.

“People need to take care of themselves early in life,” she said. “This has opened up people’s eyes to the entire issue.”

The resolution will be presented to the board at the next town board meeting. Supervisor Frank Petrone (D) said in a phone interview he believes the program’s relatively low cost is an added benefit to the positives it will do for residents.

“It’s a very minimal price,” he said. “It’s not something to put my thumb down on.”

For more information about this program, call Berland’s office at 631-351-3173.

Taking a 20-minute power walk at lunchtime has numerous health benefits. Stock photo
Are activity and exercise the same?

By David Dunaief, M.D.

Dr. David Dunaief

Let’s begin with a pretest. I want to make it clear that a pretest is not to check whether you know the information but that you have an open mind and are willing to learn.

1) Which may have the most detrimental impact on your health?

a.   Smoking

b.   Obesity

c.   Inactivity

d.   A and C

e.   All have the same impact

2) People who exercise are considered active.

a.   True

b.   False

3) Inactivity may increase the risk of what? Select all that apply.

a.   Diabetes

b.   Heart disease

c.   Fibromyalgia

d.   Mortality

e.   Disability

With the recent wave of heat and humidity, who wants to think about exercise? Instead, it’s tempting to lounge by the pool or even inside with air conditioning instead.

First, let me delineate between exercise and inactivity; they are not complete opposites. When we consider exercise, studies tend to focus on moderate to intense activity. However, light activity and being sedentary, or inactive, tend to get clumped together. But there are differences between light activity and inactivity.

Light activity may involve cooking, writing, and strolling (1). Inactivity involves sitting, as in watching TV or in front of a computer screen. Inactivity utilizes between 1 and 1.5 metabolic equivalent units — better known as METS — a way of measuring energy. Light activity, however, requires greater than 1.5 METS. Thus, in order to avoid inactivity, we don’t have to exercise in the dreaded heat. We need to increase our movement.

What are the potential costs of inactivity? According to the World Health Organization, over 3 million people die annually from inactivity. This ranks inactivity in the top five of potential underlying mortality causes (2). The consequences of inactivity are estimated at 1 to 2.6 percent of health care dollars. This sounds small, but it translates into actual dollars spent in the U.S. of between $38 billion and $100 billion (3).

How much time do we spend inactive? Good question. In an observational study of over 7,000 women with a mean age of 71 years old, 9.7 waking hours were spent inactive or sedentary. These women wore an accelerometer to measure movements. Interestingly, as BMI and age increased, the amount of time spent sedentary also increased (4).

Inactivity may increase the risk of mortality and plays a role in increasing risks for diseases such as heart disease, diabetes and fibromyalgia. It can also increase the risk of disability in older adults.

Surprisingly, inactivity may be worse for us than smoking and obesity. For example, there can be a doubling of the risk for diabetes in those who sit for long periods of time, compared to those who sit the least (5).

By the way, the answers to the pretest are 1) e; 2) b; 3) a, b, c, d and e.

Let’s look at the evidence.

Does exercise trump inactivity?

We tend to think that exercise trumps all; if you exercise, you can eat what you want and, by definition, you’re not sedentary. Right? Not exactly. Diet is important, and you can still be sedentary, even if you exercise. In a meta-analysis — a group of 47 studies — results show that there is an increased risk of all-cause mortality with inactivity, even in those who exercised (6). In other words, even if you exercise, you can’t sit for the rest of the day. The risk for all-cause mortality was 24 percent overall.

However, those who exercised saw a blunted effect with all-cause mortality, making it significantly lower than those who were inactive and did very little exercise: 16 percent versus 46 percent increased risk of all-cause mortality. So, it isn’t that exercise is not important, it just may not be enough to reduce the risk of all-cause mortality if you are inactive for a significant part of the rest of the day.

In an earlier published study using the Women’s Health Initiative, results showed that those who were inactive most of the time had greater risk of cardiovascular disease (7). Even those who exercised moderately but sat most of the day were at increased risk of cardiovascular disease. Moderate exercise was defined as 150 minutes of exercise per week. Those at highest risk were women who did not exercise and sat at least 10 hours a day. This group had a 63 percent increased risk of cardiovascular disease (heart disease or stroke).

However, those who sat fewer than five hours a day had a significantly lower risk of cardiovascular events. And those who were in the highest group for regular exercise (walking seven hours/week or jogging/running four to five hours/week) did see more benefit in cardiovascular health, even if they were inactive the rest of the day. Sitting longer did not have a negative impact on the individuals in the high exercise level group.

Worse than obesity?

Obesity is a massive problem in this country; it has been declared a disease, itself, and it also contributes to other chronic diseases. But would you believe that inactivity has more of an impact than even obesity? In an observational study, using data from the EPIC trial, inactivity might be responsible for two times as many premature deaths as obesity (8). This was a study involving 330,000 men and women.

Interestingly, the researchers created an index that combined occupational activity with recreational activity. They found that the greatest reduction in premature deaths (in the range of 16 to 30 percent) was between two groups, the normal weight and moderately inactive group versus the normal weight and completely inactive group. The latter was defined as those having a desk job with no additional physical activity. To go from the completely inactive to moderately inactive, all it took, according to the study, was 20 minutes of brisk walking on a daily basis.

All is not lost!

In another study, which evaluated 56 participants, walking during lunchtime at work immediately improved mood (9). This small study clearly shows that by lunchtime activity changed mood for the better, increasing enthusiasm and reducing stress when compared to morning levels, before participants had walked. Participants had to walk at least 30 minutes three times a week for 10 weeks; pace was not important.

So what have we learned thus far about inactivity? It is all relative. If you are inactive, increasing your activity to be moderately inactive by briskly walking for 20 minutes a day may reduce your risk of premature death significantly. Even if you exercise the recommended 150 minutes a week, but are inactive the rest of the day, you may still be at risk for cardiovascular disease. You can potentially further reduce your risk of cardiovascular disease by increasing your activity with small additions throughout the day.

The underlying message is that we need to consciously move throughout the day, whether at work with a walk during lunch or at home with recreational activity. Those with desk jobs need to be most attuned to opportunities to increase activity. Simply setting a timer and standing or walking every 30 to 45 minutes may increase your activity levels and possibly reduce your risk.

References: (1) Exerc Sport Sci Rev. 2008;36(4):173-178. (2) WHO report: https://bit.ly/1z7TBAF. (3) forbes.com. (4) JAMA. 2013;310(23):2562-2563. (5) Diabetologia 2012; 55:2895-2905. (6) Ann Intern Med. 2015;162:123-132, 146-147. (7) J Am Coll Cardiol. 2013;61(23):2346-2354. (8) Am J Clin Nutr. online Jan. 24, 2015. (9) Scand J Med Sci Sports. Online Jan. 6, 2015.

Dr. Dunaief is a speaker, author and local lifestyle medicine physician focusing on the integration of medicine, nutrition, fitness and stress management. For further information, visit www.medicalcompassmd.com or consult your personal physician.

Recent studies suggest that sleep deprivation results in weight gain. Stock photo
Even short-term sleep deprivation can negatively impact health

By David Dunaief, M.D.

Dr. David Dunaief

If you’ve ever felt fatigued, this article is for you. Fatigue is a common patient complaint, and there is a long list of maladies that may be responsible: sleep deprivation, infectious diseases (such as Lyme) and hypothyroidism (low thyroid functioning), to name a few.

In this week’s column, we are going to focus on sleep deprivation, since it may impact our quality of life and influence concerns like weight gain and disorders that involve insulin resistance, kidney function and cognition. Even a short duration of inadequate sleep can have a surprising impact.

How much sleep do we need? Conventional wisdom has always been eight hours (1). However, it varies depending on the individual. About 26 percent of Americans get eight or more hours of sleep per night (2). During the workweek, approximately 30 percent of individuals in the U.S. get fewer than six hours of sleep. When you get down to five hours or less per night, the evidence suggests that most people get into trouble.

Weight gain

In a small, prospective (forward-looking) study, results showed that sleep deprivation results in weight gain. Why is this? You actually burn more calories (about 5 percent more) when you sleep fewer hours, but you consume significantly more calories than you metabolize (3). The individuals who were sleep restricted gained about two pounds. That may not sound like much, but the scary part is it occurred over a short time period — one workweek, or five days.

Study participants were in a controlled setting, with half of them restricted to five hours of sleep and half of them permitted to sleep up to nine hours. Everyone was given access to ample amounts of food. Interestingly, not only did the amount of food consumed by those who were sleep deprived increase, but carbohydrate consumption became dominant. When participants who had been sleep deprived were transitioning toward adequate sleep in the second week, they began to make better food choices and started to lose weight.

In addition, researchers found that natural melatonin levels are altered by sleep deprivation, resulting in a change in our circadian rhythms or biological clocks that make it harder to fall asleep.

In another study, the results were similar (4). This one involved 225 healthy participants. Those who were sleep restricted gained about two pounds of weight over five days. Just like the previous study, participants were in a controlled laboratory where food was provided and their sleep monitored. In both studies, significant late-night eating was common.

In the Nurses’ Health Study, results showed that, for participants who regularly slept five hours or less, there was a 32 percent increased risk of gaining more than 30 pounds (5). This observational study involved approximately 68,000 women and was 16 years in duration.

Effects on aging

In a very small, but well-designed, randomized prospective study, adipocytes (fat cells) in sleep-deprived individuals became resistant or insensitive to ever-higher levels of insulin (6). This may be a precursor to increased risk of weight gain and diabetes. The sleep-deprived participants were allowed four-and-a-half hours of sleep per night over a period of four days compared to the control group, which was allowed eight-and-a-half hours per night. The most surprising effect found was that the fat cells of sleep-deprived individuals aged approximately two decades metabolically, so that participants in their 20s had fat cells that functioned similarly to those of people in their 40s.

Diabetes

In the Millennium Cohort Study, participants with inadequate sleep were at significantly greater risk of developing type 2 diabetes than those with sufficient sleep (7). In fact, participants who had five hours of sleep per night were at a 28 percent increased risk, and those who had fewer than five hours a night had a 52 percent greater risk. Adequate sleep was defined as at least seven hours. This was a prospective (forward-looking) observational study involving over 47,000 military personnel. The researchers brought up a good point: While sleep is on the decline, diabetes has been on the rise over the last three decades.

Cognition

Sleep deprivation’s impact on cognition may be immediate. In a study, healthy participants were subjected to sleep deprivation that resulted in decreased neurobehavorial functioning, or cognition, when compared to controls (8). Those in the sleep deprivation group were restricted for five days to four hours per night in bed, while those in the control group were allowed 10 hours per night. The sleep-deprived group was then allowed one night of 10 hours of sleep. While they recovered some neurobehavioral functioning, they didn’t reach their previous baseline levels. This study simulated the workweek followed by one day of recovery. The study was an in-laboratory, well-controlled study involving 159 healthy participants.

In the Familial Adult Children Study (FACS), presented at the prestigious 64th Annual American Academy of Neurology Meeting, participants with poor quality sleep were more likely to have high levels of amyloid beta plaques (9). The significance of these plaques is that they may be precursors to Alzheimer’s disease. The researchers discovered that participants who woke five times in each hour of sleep had a substantially greater risk of developing amyloid beta plaques. Thus, those with lesser sleep efficiency were more likely to have preclinical Alzheimer’s disease. None of the patients showed any symptomatic cognitive deficits, only early preclinical signs of Alzheimer’s. This is a very preliminary study that requires further prospective and randomized clinical trials.

At this point, we can agree that sleep deprivation is something to be taken seriously. If you are fatigued, it may not be a bad idea to have your glucose (sugars) checked. Also, getting sufficient sleep may help slow the metabolic aging of your cells — and most of us want to forestall the aging process. As we age, cognition is a central issue. If we can decrease our risk of cognitive decline while aging, this is an ideal scenario. So, make sure you are getting good quality and quantity of sleep that fits your individual needs. If you struggle to sleep, seek professional help. It is not just an inconvenience to be tired, it actually affects your health.

References: (1) Sleep. 1995;18:908. (2) National Sleep Foundation, 2005. (3) Proc Natl Acad Sci USA. 2013;110:5695-5700. (4) Sleep. 2013;36:981-990. (5) Am. J. Epidemiol. 2006;164:947-954. (6) Ann Intern Med. 2012;157:549-557. (7) Diabetes Care Online. July 2013. (8) Sleep. 2010;33:1013-1026. (9) AAN Abstract 703.

Dr. Dunaief is a speaker, author and local lifestyle medicine physician focusing on the integration of medicine, nutrition, fitness and stress management. For further information, visit www.medicalcompassmd.com or consult your personal physician.