Two pioneering health professionals supported each other through cancer

When it comes to getting things done, it’s often the people behind the scenes, as much as the big names in front, who deserve the credit.

That’s true for two pioneering women who shunned the spotlight and whose recent deaths are a great loss for the Charlotte region’s health community.

Donna Arrington, 69, who helped start a regional HIV/AIDS organization in the early years of that epidemic, died May 13 of multiple myeloma.

Donna Arrington

Sharon Dixon, 68, a nurse who helped create Charlotte’s first hospice, died June 27 due to complications from a rare lymphoma – Waldenström’s macroglobulinemia – that she lived with for 20 years.

Arrington and Dixon not only worked together as professionals in fields that often intersected, they became friends. They shared not only their passion for helping people, but their love of animals, and in the end, companionship during treatments for cancer.

In 1990, Arrington became the first executive director of what was then called the Regional HIV/AIDS Consortium. It came “at a time when people were afraid to even touch a person that had AIDS,” recalled Joe Gentry, Arrington’s longtime administrative assistant.

Sharon Dixon

But Arrington, with a supportive board – that for some years included Dixon – helped regional leaders make plans and raise money to help prevent HIV infection and serve people who already had it.

“She had a great ability to put the right people in touch with the right people,” Gentry said. “You wanted the right people at the table.”

One of them was Dr. Bill Porter, a Charlotte oncologist who served a stint as consortium chairman in those early days.

“What I remember is how easy Donna made it for me to sit in that chair and how dependable she was and how confident she was that the work she was doing was terribly important,” he said.

Today, Porter is a physician for Hospice & Palliative Care Charlotte Region, and he also recalls the beginning of that organization in 1978.

“Sharon was present at the creation,” Porter said.

In the early years, Dixon was the only nurse, visiting up to 12 dying patients and their families in their homes.
Later, in administrative roles, she helped hospice grow and thrive. Today it serves 450 patients, has about that many employees and operates two residential centers for dying patients whose symptoms can’t be managed at home.

 “Sharon sort of figured it out – who you needed to talk to, where the money was,” Porter said. “She did all this while she was sick for years with this cancer that finally took her life.”

Dixon’s interest in hospice grew out of childhood experience in Oklahoma. At 17, she took care of her mother who suffered tremendous pain while dying, said Marilyn Morenz, a friend and hospice nurse.
“Sharon never wanted anyone else to experience that kind of suffering.”

In recent months, Arrington and Dixon found comfort in their shared circumstance.

When she felt good enough, Dixon would sit with Arrington through hours of infusion therapy, said Cathy Morelli, Arrington’s partner of 15 years. “Donna in turn would do the same for Sharon....They both did good deeds in their lives and then good deeds for each other as their ends came near.”

When Arrington died first, that was “a really tough loss for Sharon,” Morenz said. “As much as they were able, they were there for each other at the end.”

Outdoor Nation encourages young people to get active

Outdoor Nation has teamed up with Blue Cross and Blue Shield of North Carolina and North Carolina Recreation and Park Association to encourage young people to get outside and get active.

The groups are offering 2013 GO NC! Health Challenge Grants to support initiatives that increase physical activity and promote healthy lifestyles. Grants of up to $7,500 will be awarded for projects from the eastern, central and western parts of North Carolina. They must be based in North Carolina and use outdoor recreation as a way to address health concerns. 

To apply, submit your proposal by Aug. 30. Awards will be announced Sept.18.

Chris Fanning, executive director of the Outdoor Foundation, the organization that started the Outdoor Nation movement, called Outdoor Nation a national initiative that reconnects "millennials" -- also known as Generation Y, born between the early 1980s to the early 2000s.

In the past year, Outdoor Nation has awarded more than $250,000 to youth for projects that reconnect young people with nature. 

“Since 2012, our GO NC! initiative has worked with organizations across the state to increase access to greenways and public bicycles. We’re thrilled to expand this work to support creative and passionate youth who are keyed into new and exciting ways to promote healthy lifestyles in our state,” said Kathy Higgins, BCBSNC vice president of corporate affairs.

The grant program announcement follows the recent Outdoor Nation Signature Summit on the Outdoors. In late June, nearly 200 young people gathered at UNC-Chapel Hill and camped overnight at the 47,000-acre Jordan Lake State Recreation Area to brainstorm and develop projects that get more people outdoors.

Finding a healthy retirement community

A new statewide survey of retirement communities has ranked them as the healthiest, based on outdoor and indoor amenities, activities, dining options and health facilities.

You can find the results, "Retirement Living at its Healthiest," here. The survey was done by  Senior Hospitality International, a for-profit Charlotte-based organization founded to serve seniors.

“The main characteristic that sets these communities apart is their comprehensiveness,” said J. Keesey Hayward, president of Senior Hospitality International. “On a single campus they combine the resort services and amenities of an active retirement community with the healthcare services and amenities of a supportive retirement community. They can provide for the current lifestyle wants as well as the future healthcare needs of active retirees.”

The organization's website is www.healthyrcs.org.

Charlotte tinnitus sufferers warn of ear damage from loud music

Christy Beth Kluesner feels she's been "robbed of silence."

For 32 years, Kluesner, 64, has suffered from tinnitus, also known as ringing in the ears.

No matter where she is, she hears a "cacophony of unpleasant sounds."

Sometimes it’s like crickets that won’t stop chirping. Other times, it’s like the non-stop buzzing of a fluorescent bulb.

To compensate for this and her hearing loss, she wears digital hearing aids that produce calming music designed to reduce the din of tinnitus.

"It’s a tremendous life adjustment," she said.

Tinnitus (TIN-it-us) is the medical term for the perception of sound in one or both ears when no external sound is present. The different sounds – hissing, roaring, whistling, chirping or clicking – can be intermittent or constant. The perceived volume ranges from subtle to shattering.

For Kluesner, the problem came on after years of hearing abuse. As a child actor in New York City, she fired a loud pistol eight times a week for eight months during performances of “The Power and the Glory.” For two decades, she was a Big Band singer, performing nightly in front of the orchestra’s trumpet section.

Today, she and other members of the Charlotte-area Tinnitus Support Group are trying to bring awareness to the condition, raise money for research and encourage businesses to turn down the sound to under 80 decibels – the level that can cause irreversible hearing loss and damage.

Recently, Kluesner and her husband, a saxophone player who has mild tinnitus, saw the IMAX 3D movie, “Star Trek Into Darkness.” Both wore ear plugs as they watched ads promising “Earth Shaking Sound.”

With an app on her iPhone, Kluesner documented the decibels – 80 most of the time and up to 94.

"Our world has really gotten much louder," she said. "We’ve got to calm it down."

Tinnitus affects about 50 million people, especially men and women in the military, according to national estimates.

The Charlotte-area support group has more than 70 members, said leader William Hunt, 67, who developed the condition in 2009, after firing a pistol on his Shelby farm.

“I went completely deaf for 10 or 15 seconds, and then my hearing came back,” he said. Some weeks later, he began hearing a scratchy sound in both ears, and in days, it became “intolerable. I couldn’t sleep at night. If I did fall asleep from exhaustion, it woke me up within an hour.”

There’s no cure. Doctors typically refer patients to audiologists, but therapies are “unpredictable,” Hunt said.

Some people try Tinnitus Retraining Therapy, using electronic devices in the ears, producing sound in an attempt to trick the brain into ignoring the tinnitus. Hunt chose a metabolic treatment created by a practitioner in Israel.

“The concept is that the body can heal itself if you remove the barriers to healing and bring metabolic indicators into normal range.” Hunt spent three months in Tel Aviv, taking “special treatment capsules,” which he still takes today, at $100 a month.

“I can’t say it was a cure (but) I got 90 percent relief.”

Hunt’s recommendation? “If I were you, I would protect my hearing as I do my eyesight. Don’t go to any loud concerts. Wear ear plugs.”

###
The Charlotte-area Tinnitus Support Group is sponsoring its first annual walkathon Sunday at 1 p.m. at Freedom Park. Contact: William Hunt, 704-567-6860, williamrhunt@att.net.

American Tinnitus Association, www.ata.org

Free help for North Carolina tobacco users who want to quit

QuitlineNC, the state's toll-free telephone and online support service to help tobacco users quit, is offering free nicotine replacement patches, gum or lozenges to North Carolina residents who sign up for four telephone coaching sessions.

In Mecklenburg County, 146 tobacco users signed up for "quit coaching" last month.

“We want to support the efforts of smokers and other tobacco users who choose to take responsibility for their own health by quitting,” said Dr. Aldona Wos, secretary of the Department of Health and Human Services.

To sign up for the over-the-counter medicine and support, call QuitlineNC, 1-800-QUIT-NOW (1-800-784-8669), or visit www.quitlinenc.com. 

Each enrollee will develop a personalized "quit plan" with a "quit coach." The supply of medication available to each individual varies, depending on insurance coverage, and is available on a first-come, first-served basis.

Future doctors unaware of own obesity bias

Two of five medical students have a bias against obese people and they don't even know it,  according to a study by researchers at Wake Forest Baptist Medical Center in Winston-Salem. The study is published online in the Journal of Academic Medicine. 

“Because anti-fat stigma is so prevalent and a significant barrier to the treatment of obesity, teaching medical students to recognize and mitigate this bias is crucial to improving the care for the two-thirds of American adults who are now overweight or obese,” said Dr. David Miller, associate professor of internal medicine and lead author of the study.

The three-year study included more than 300 third-year medical students from 2008 through 2011. The students were from 25 states and 12 other countries. 

Researchers used a computer program called the Weight Implicit Association Test to measures students’ unconscious preferences for “fat” or “thin” individuals. Students also answered a survey assessing their conscious weight-related preferences. 

Overall, 39 percent of medical students had a moderate-to-strong unconscious anti-fat bias as  compared to 17 percent who had a moderate-to-strong anti-thin bias. Less than 25 percent of students were aware of their biases.

The study didn't specify which teaching strategies are most effective, but to combat prejudice, doctors have to acknowledge its existence, Miller said.

At Wake Forest, all third-year medical students in the family medicine program must complete the online Weight Implicit Association Test and then participate in an in-class discussion of their experience with bias. 

“Bias can affect clinical care and the doctor-patient relationship, and even a patient’s willingness or desire to go see their physician, so it is crucial that we try to deal with any bias during medical school,” Miller said. “Previous research has shown that ... Doctors are more likely to assume that obese individuals won’t follow treatment plans, and they are less likely to respect obese patients than average-weight patients.”

The study was funded by a grant from the National Cancer Institute. Co-authors are Dr. John Spangler, Mara Vitolins, Stephen Davis, Edward Ip, Gail Marion, and Sonia Crandall of Wake Forest.

Cancer patients want to talk with doctors about costs

Researchers at Duke Cancer Institute have found that most cancer patients would like to talk about the cost of care with their doctors, but they often don't because they fear the discussion could compromise the quality of their treatment.

But patients who do bring up the subject of finances believe it helps decrease their costs. 

Researchers surveyed about 300 insured patients treated at Duke and affiliated clinics in rural North Carolina. 

Dr. Yousuf Zafar, assistant professor at Duke and lead author of the study, said 57 percent of participants in the survey said they wanted to talk about treatment costs with their doctors, but only 19 percent actually had that conversation.

“There’s a real disconnect,” Zafar said. “Even people with the highest needs aren’t bringing up costs as part of the decision-making process.”

Some respondents said they were embarrassed to bring up cost. Others didn’t think it was something their doctor could help with or should worry about. Twenty-eight percent said they wanted the best possible care regardless of cost. 

“We found that when patients did talk about costs with their doctors, many felt they gained something from the discussion – that their expenses were reduced,” Zafar said. 

Zafar said this suggests the "perceived barriers to the cost conversation aren't real" and that doctors should have tools to identify patients who need financial help and direct them to appropriate resources.

“With today’s evolving health insurance landscape, cancer treatment-related costs to patients are more important than ever,” Zafar said. “...Knowing that patients want to have these discussions should give us confidence in making this a routine practice.” 

The research will be presented June 3 at the 2013 Annual Meeting of the American Society of Clinical Oncology in Chicago. 

The study was funded by the Duke Cancer Institute Cancer Control Pilot Studies Award, the Duke Clinical Research Institute Comparative Effectiveness Research KM1 Award, and an American Cancer Society Mentored Research Scholar Grant.