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How a Lafayette mother and son turned a lifelong mental health struggle into a haven for others • The Current

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Clarice Gallegos spent too many years waiting for the dreaded knock on the front door – the one most parents fear.

“We found your son dead on the side of the road,” said the police.

As the mother of a “problem child” – her cross to carry – she always expected the worst. Whether her son Brian was near or far, those turbulent years never seemed to give way or pause. They only got more intense and increased their worry and fear.

But that knock never came.

If Gallegos, 67, knew then what she knows today, she will admit: “I could probably have done so much better as a mother, but I’m so past the guilty feelings.”

Clarice Gallegos is direct and to the point. She made peace with the past.

For 46-year-old Brian Boswell, the past still lies ahead and there are unsolved problems to ponder.

But that hasn’t stopped this family from banding together and creating a safe haven, the Focus Clubhouse, for people like Boswell with mental illnesses.

When the Lafayette nonprofit at 904 General Mouton Ave. When it opened its doors, it became one of over 300 clubhouses in over 30 countries affiliated with Clubhouse International. It’s the only one in Louisiana. Boswell credits the Miami clubhouse for turning his life around. He was in his early 30s when he found refuge and responsibility there. “I grew up. I grew up in Miami,” he says.

Before and even after he was diagnosed with post-traumatic stress disorder, Boswell flirted with suicide. It was not for him to call 9-1-1 and threaten to swallow his entire bottle of medicine. And then pull through.

Sometimes Boswell was upset by alcohol and crack and all kinds of drugs he could afford, and sometimes Boswell was ready to give up his life pass. And sometimes he just wanted a warm bed in a homeless shelter so he wouldn’t have to freeze to death while sleeping outside. Warmer weather was the main reason Boswell chose Florida as his next destination after South Carolina politely threw him there with a one-way bus ticket. He was also inspired to travel to the Sunshine State because the New Orleans Saints played in the Super Bowl in Miami Gardens that year. “That was my way of thinking back then,” he says. “I wanted to see the Saints in the Super Bowl.”

Prior to his journey to recovery, there were many sorrows and horrors that destroy many families. And for Brian Boswell, they started at such an early age.

Gallegos remembers a certain event that seemed to determine a future that, like so many parents, she was not ready, let alone accept. It happened when Boswell was only 5 or 6 years old. That day she almost had to force him onto the school bus. Later that evening, he refused to change his school clothes into his play clothes. And when Gallegos tried to discipline him for disobedience, her world immediately turned upside down. “That little fool blew my mind,” she recalls. “And it really scared me.”

She remembers thinking, if he did this when he was 5, what would he do when he was 12 if he were bigger and stronger? For Gallegos, those early days were also marked by a love-hate relationship with Ritalin prescribed for their son and a helplessness but annoyance when their hyperactive child was admitted to special school classes just because they were slow to learn. She was sure that the schools would pass him on from class to class just to get rid of the problem child. Nor did it help that Boswell had apparently gotten sharp enough to attribute his bad behavior to forgetting to take his medication.

Their son was born with the umbilical cord around his neck, and Gallegos was unsure of the effects the lack of oxygen had on his mental performance and life. “In the 1980s, nobody knew about mental health problems and there was no middle ground for slow learners,” she recalls.

For Boswell, his problems – and his pain – are ingrained in what his mother calls the “appalling incident.” It happened when he was about 7 years old. His parents divorced at the time and he was living with his father at the time. It’s the reason for his PTSD.

According to Gallegos, he “had the lighter” because he likely stole cigarettes from his father to smoke. Anyway, Boswell and a couple of boys played and then one boy poured gasoline on another. “Brian didn’t add the gas, but delivered the lighter,” says Gallegos. The little boy died.

“It changed my life,” says Boswell today. “As a little normal child, I didn’t understand what was just happening. I couldn’t handle it properly. ”The incident continues to haunt him, and nightmares only add to his fear. “Something that is traumatic changes you,” he continues. “You’re not normal after that.”

This tragedy made his self-esteem problems worse. “I’ve hated myself all my life. I had problems at school, ”he says. “When I was 15, I used cocaine and drank alcohol at the same time.”

At 16, Boswell dropped out of high school. Although he worked after that, he celebrated. “And I’ve faithfully taken every drug known to mankind except heroin. I always assumed that you had to work with needles, ”he says, pointing out his fear of needles.

Then, about a decade later, in 2001, his father, a Vietnam veteran, died of cancer. The loss devastated Boswell, who was close to his father.

As the years turned into decades, Gallegos tried desperately to help her son until she realized she had helped him.

She had bought him vehicles only to see them destroyed. There were innumerable nights she paid for hotels. She was never sure if he actually spent the nights there or bought more drugs. There were the rehab stays that she signed up for.

She always felt overwhelmingly guilty and thought she had to help him no matter what he did.

One day, she says, she will be tired of being sick and tired. “I didn’t know whether he would live or die. I had no idea where the kid was, ”she says.

What she knew for sure was that she couldn’t go on like this. The next time he called, she lied and told him that she had no money to send him. “He knew I was lying,” she says.

But hard love had set in and her son had lost his trailblazer.

“I hung up and cried and cried and cried,” recalls Gallegos. “I cried like a baby. But I couldn’t let him know. “

Your action has definitely had an impact. “After that, I haven’t heard from him for a long time,” says Gallegos.

The teachers treated the left Boswell as a “problem child”. His struggle with mental health was compounded by trauma at a young age. Photo by Travis Gauthier

Joining the association

The Miami clubhouse wasn’t the first clubhouse model Boswell had encountered, but it was the first that made him believe he could stay sober, drug-free and live the life he truly dreamed of. The concept of the clubhouse made him feel like he was no longer an outsider – no longer an eccentric. He had finally found his tribe.

“You’re not with ‘normal’ people,” says Boswell. “You are around someone who deals with similar problems that you have to deal with every day of your life.”

As in clubhouses around the world, there are members of the Focus Clubhouse who have tried too long to fit into the so-called normal world. And it has brought them unnecessary heartache and pain.

“What I love most is the gratitude that the members feel for the clubhouse,” says Gallegos, who acts as the clubhouse director. “They really enjoy their time there. It’s just a sense of achievement for me and her. “

Member Dawn Koch, 51, gets goose bumps just talking about the impact the Focus Clubhouse has had on her life and what it means to be with like-minded people. “We all work together,” says Koch. “We are like family with each other.” And that means taking care of one another and taking care of one another. “When I’m isolated, people worry about me,” says Koch. “I tried to commit suicide three times.”

Now she is looking forward to her days and the camaraderie she feels with other members.

At the age of 28 he was diagnosed with depression and later with bipolar affective disorder. Koch wants the public to understand the importance of having a safe haven where other members understand what they have been through or are going through.

According to Koch, family and friends need to understand that small triggers can throw people with mental illness off course. That is why it is important to have the correct diagnosis.

They shared their stories and aired their laundry so that the public could gain insight into their world and be able to better understand and help their own family members and friends who may be mentally ill, or even themselves.

Gallegos dreams of the day that the Focus Clubhouse has a bigger building (it now has around 10 active members) and can help more individuals supplement their social security disability exams for mental illness with a 15-20 hour job transition program. She also wants to build a garden at some point where they can harvest their own food.

To donate to the Focus Clubhouse (your donation can help with Uber trips so members can get to and from the clubhouse daily) click here.

Their primary goal is to become an accredited clubhouse, which they estimate will take another two to four years. You are in for the long term.

When Boswell decided to come home, he called his stepfather David and asked for permission to return to Louisiana.

His mother remembers when he called her. “I said yes for some strange reason,” she recalls. “I’ve always blamed God.”

Coming home to Louisiana for her son meant finding the nearest clubhouse so he could stay on his recovery path. But there were no clubhouses in the state. And then Boswell made a big decision that changed everyone’s life: “Well, I’m just going to start one.”

At first, Gallegos was reluctant to accept his plan. But when she saw that her son was serious, she came out of her recent retirement and joined him. The Louisiana clubhouse does not provide medical and clinical services, but members already have such providers. However, that doesn’t stop Gallegos from urging everyone not to let stigmatization deter them from seeking help from professionals if they suspect they have a problem, be it a counselor, therapist or psychiatrist.

In retrospect, Boswell acknowledges that his life was that fork in the road. “You can go the good way or you can go the bad way. I went the bad way, ”he says. But he has no regrets. “Personally, I wouldn’t change it for the life of the world,” he says. “I understand why God kept me to himself – for the clubhouse.”

For Member Koch, it is important that the public understands who they are.

“People with mental illness are incredibly talented,” says Koch. “And when they find a place where they are comfortable to get help when they need it, they are very knowledgeable and effective. Many of us work and continue to work and are very good at what we do. “

Health

Never ignore these 6 signs in your pets

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From Dr. Cynthia Maro

There are times when your pets are begging for extra treats, attention, or play time and it’s safe to ignore, but some signs that can start out as simple nuisances can be leading indicators of very serious health problems.

Knowing which signs require your attention and action can be life saving for your companion. The sooner you alert your veterinarian to these symptoms, the more likely they are to make a diagnosis and get your furry friend on the road to restoring health.

Below are some key indicators of illness.

1. Panting, Increased Breathing Rate, Open-Mouth Breathing: Panting can be a sign of pain, heat stroke, fever, or respiratory or cardiovascular problems.

A pet’s respiratory rate will increase as the need for oxygen increases, which can occur with all of the aforementioned diseases.

Cats always prefer to breathe through their nose. So if you breathe with your mouth open it is a sure sign of stress that can be the result of extreme stress, asthma, upper airway obstruction, heart or lung disease, or even cancer.

Increased respiratory rates also occur in infections that cause very high fevers or hyperthermia from heat stroke.

Wheezing that persists after a game of play and adequate rest should be taken seriously.

Conditions such as congestive heart failure, anemia, pneumonia, or pleural effusion (a condition where fluid fills the chest cavity and compresses the lungs) all need to be diagnosed through blood tests and x-rays.

All of these disorders can be life-threatening, and in cases such as heat stroke, immediate treatment through an emergency room visit is needed.

2. Salivation: This may be a sign of gastrointestinal discomfort, nausea, a foreign body in the mouth or throat, an oral tumor or infection, a sialocele (disorder of the salivary glands), a lymphoma or a tooth root abscess.

Diagnosis may include sedated oral inspection and x-rays.

3. Increased thirst: Thirst will increase slightly in hot weather or with an increase in salty snacks (think jerky, bully sticks, and rawhide). Prolonged increases in water consumption must be considered as it may be due to diabetes mellitus, diabetes insipidus, kidney disease or kidney failure, VBD (vector-borne disease, such as Lyme disease), an endocrine or hormonal imbalance such as Cushing’s disease or thyroid disease.

Diagnosis requires urinalysis, blood chemistry tests, and in some cases, more expensive hormone tests and ultrasounds.

4. Odor Change: Although pets can sometimes have an odor when it rains, a persistent or foul odor is often the first sign of illness.

“A smelly pet” can indicate something as small as a superficial skin or ear infection, or something much more serious, including an infected anal gland or a deep ear infection. These diseases can be treated very effectively by your veterinarian.

Some other worrying issues include odors from oral infections or tumors, deep skin infections, hormonal imbalances, diabetes, internal or external yeast or bacterial infections, anal gland narrowing, ulcerated skin tumors, or sinus infections.

5. Appetite Change: Lack of or increased appetite in pets should never be ignored.

Often times a pet has an increased appetite when they develop diabetes, but this sign can also be associated with certain types of cancer or tumors such as insulinoma, hyperthyroidism, Cushing’s disease, or adrenal cancer.

Pets often have a decreased appetite when battling infections, in pain, or having gastrointestinal disorders. The list of diseases that affect appetite is quite long.

6. Vomiting and diarrhea: Bowel discomfort or intermittent gastrointestinal symptoms (such as spitting once a week or even once a month) are signs that some part of the digestive process is not working properly.

Diagnoses such as intestinal parasites, food sensitivity, liver, gallbladder, and pancreatic diseases can all be treated with medication, but require a visit to the vet for appropriate treatment.

Your pet’s vet will know what tests to order to get insight into the cause of any of the signs mentioned.

If your fears of a negative or poor diagnosis are preventing you from taking action, please discuss this with your veterinarian. It’s always best to investigate early.

If you are concerned about high costs, your vet will want to know both your time and financial budget to care for your companion.

Not only can your quick attention to the warning signs of illness help your pet get better, but they can also reassure you, knowing that your companion will be comfortable, pain-free, and well-cared for.

Dr. Cynthia Maro is a veterinarian at Ellwood Animal Hospital in Ellwood City and Chippewa Animal Hospital in Chippewa Township. She writes a bi-weekly column on animal care and health issues. If you have a topic you’d like to address, email ellwoodvet@msn.com.

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Health insurance co-pay accumulators little known, costly for patients

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Julie Turner was just 17 when she needed powerful doses of radiation and chemotherapy to wipe out her stage 3 Hodgkin’s Disease. 

The harsh, 12 rounds of chemo and 60 radiation treatments at Ohio State University hospital in the 1970s came with two major side effects: She was sterile, and her bones became abnormally brittle, eventually requiring a twice-a-year regimen in the hospital for medication to reduce her risk for fractures. 

But now, her post-retirement health insurance no longer covers those $5,000 semi-annual treatments of Prolia she needs to protect her fragile bones.

At first, after finding a pharmacy in her hometown of Springfield that would give her the shots at a much lower cost, then landing a $1,500 grant from Prolia manufacturer Amgen to help offset the cost, Turner thought she had discovered a way around her insurance company.

Unfortunately, she did not.

The former school treasurer learned that Aetna wouldn’t count the $1,500 from Amgen toward her $4,000 maximum annual co-pay – even though Aetna isn’t contributing a dime for the Amgen drug. 

The upshot: She still has to come up with that $1,500 toward her co-pay out of her own pocket each year. It’s as if the grant doesn’t exist.

It turns out that Turner ran head-on into a little-known practice that pharmacy benefit managers and health insurers have come up with in recent years known as a co-pay accumulator. Simply put, the maneuver doesn’t count any co-pay assistance that patients obtain toward either their health-insurance deductible or their maximum annual out-of-pocket spending. That includes increasingly common aid from a drug manufacturer striving not to lose a prescription for an expensive drug – even though the insurance company still winds up with that patient aid.

Consolidation provides fewer choices to consumers

You might wonder: How are pharmacy benefit managers, known as PBMs, and insurance companies able to do this?

The answer: Because America’s health-care system is so consolidated that consumers have few options. Without the full-fledged competition that’s a basic component of capitalism driving prices down, it puts consumers in a position to take it or leave it.

Just three PBMs control nearly 80% of the U.S. market. And owners of all three – such as CVS Health, whose $69 billion union with Aetna in 2018 was the biggest health care merger in U.S. history – also offer health insurance.

The sale of expensive specialty drugs like the one Turner takes are especially monopolized. In 2020, just four specialty pharmacies – led by CVS – accounted for 75% ($132 billion) of total U.S. prescription revenue from specialty drugs dispensed by pharmacies, the nonpartisan newsletter Drug Channels found in early May.

No company outside of the “big four” has a market share of more than 3%. And each of the four is completely or partly owned by one of the country’s largest PBMs – which are part of large, vertically integrated organizations themselves, the newsletter said.

The PBMs and health insurers both say that “co-pay accumulators” are necessary to alleviate the high cost of prescription drugs, especially specialized brand-name products that typically are the most expensive. 

Brand-name drugs account for 10% of Americans’ prescriptions but 80% of the cost –$409 billion a year, the nonprofit West Health notes. Last year, PBMs generated a third of their gross profits from specialty medications, Drug Channels says.

The increasing price of prescription drugs consistently registers as a major concern among Americans. 

Two-thirds said in an April 2020 Gallup Poll that their prescription costs were going up. In November 2019, Gallup found that nearly a quarter had at least one instance in the previous year when they didn’t have enough money to pay for needed prescription drugs. And 13% said that within the previous five years, they’ve had a friend or family member die after not being able to pay for needed medical treatment.

Patients all across America are ‘astonished’ when they see their bill

If your health insurance policy doesn’t already have such a co-pay accumulator, sometimes called an “accumulator adjustment program,” it likely will soon. A regulation approved by the administration of President Donald Trump authorized them for the first time starting this year. 

Drug Channels estimates that within the next year, more than 80% of commercially insured beneficiaries will be in plans with these benefit designs – although not all plan sponsors will have fully implemented them.

“This is all consolidation and it’s all part of a theme,” said Ted Okon, executive director of the ‎Community Oncology Alliance, a nonprofit based in Washington, D.C.

“The PBM-insurer complex has gotten more aggressive over time,” he said.

He said thousands of Julie Turners exist across America – people who are astonished when they receive their pharmacy bill and realize it’s not covered by insurance because of the obscure co-pay accumulator clause.

“What that does is it takes money out of the pocket of the patient and puts in the PBM/insurers’ pocket,” Okon said. “It’s going to get worse. Because of consolidation, the PBMs and insurers have gotten more brash, more aggressive, and they will in the future.”

The bottom line of PBMs, some of the biggest corporations in the U.S., actually was helped by the COVID-19 pandemic. 

“Some of the leading PBMs and health-coverage companies in this market have been reporting staggering sales, with people stocking up medications to deal (with) lockdowns and movement restrictions, said Fortune Business Insights, citing quarterly increases of as much as 20% or more.

Annual revenue at UnitedHealthcare revenue jumped 20% to $357.1 billion; its PBM and care services group, Optum, reported revenue of $35.9 billion, up more than 20%, in the fourth quarter alone. Revenue for CVS Health, which includes its PBM, Caremark, climbed 4.6% to $268.7 billion in 2020. In the first quarter of 2021, CVS recorded 10% profit growth.

The 2020 total for Cigna, which owns the PBM Express Scripts, was $160.4 billion, a 4.5% increase from 2019.

Profits for major health insurers in the first quarter of 2021, compared to net income for the same period last year, were up across the board. Anthem’s bottom line increased over 9%, to $1.7 billion; Centene’s jumped to $699 million from $46 million; Humana’s total of $828 million represents a 75% leap; Molina ‘s $228 million was $50 million higher than during the first three months of 2020; UnitedHealthcare Group’s figure was $4.9 billion, a rise of 43%.

At the same time, co-pay accumulator programs are making life-saving treatments increasingly inaccessible, the Hepatitis Foundation says: “Research shows that the more out-of-pocket costs a person has to pay, the more likely they are to abandon their medication.”

Ted Okon, executive director of the Community Oncology Alliance in Washington, D.C., says three pharmacy benefit managers now control 80% of the market.

Health insurers, PBMs say co-pay accumulators help control costs

On the other side of the argument, the trade group America’s Health Insurance Plans, which represents health insurance companies, sees co-pay accumulators as a method to hold down costs.

“Branded (drug) manufacturers offer coupons to circumvent patients’ cost-sharing for branded drugs and to avoid responsibility for the fundamental reason for higher patient costs – namely, the high price of the drug that is set and controlled solely by manufacturers,” said a statement the trade group based in Washington, D.C., provided from Jeanette Thornton, senior vice president of product, employer, and commercial policy.

The group notes that coupons are banned from government health-care programs such as Medicare and Veterans Affairs. The Department of Health and Human Services deems them a violation of a federal anti-kickback statute because the drug manufacturer offering the coupon is directly benefiting from its use at the expense of taxpayers.

Ashley Czin, deputy vice president of policy and research for the Washington-based Pharmaceutical Research and Manufacturers of America, which represents major U.S. drug makers, said the group believes that co-pay accumulators “are operating at the detriment of patients.”

“We believe the accumulator-adjustment program unfairly targets patient cost-sharing assistance,” she said.

A statement from the Pharmaceutical Care Management Association, the trade association for PBMs, the middlemen in the drug supply chain, blamed drug makers for the situation.

“Co-pay accumulator programs mitigate the harmful impact that drug manufacturer copay coupons have on overall health plan costs,” the association said.

“The accumulator programs are needed because drug manufacturers offer coupons to insured patients, regardless of their incomes, to induce patients to take a more expensive brand drug instead of a less costly generic or equally effective, less expensive, alternative medication,” the group said in a statement.

Doctors groups oppose provision that limits prescriptions

It’s that “equally effective” medication statement that especially upsets Turner. Her insurance company informed her that, although it wouldn’t cover the Prolia injections that had been helping her for years, it would pay for the cheaper Fosamax, a pill taken weekly.

But about a year and a half after switching to the new medication, a bone-density scan known as DEXA (dual energy X-ray absorptiometry) by her doctor showed that her bone-mineral density had deteriorated significantly, which increased the likelihood of a debilitating break. The AARP notes that breaking a major bone increases the mortality rate for older adults.

However, her insurance company still wouldn’t pay for the drug that worked.

Finally, Turner’s doctor suggested contacting Prolia’s manufacturer to seek financial help.

Physicians take a dim view of pharmacy benefit managers and insurance companies in effect second-guessing their medical judgment for the best treatment of their patients.

The American Medical Association approved a resolution last fall to “support federal and state legislation or regulation that would ban co-pay accumulator policies.”

Doctors’ groups have staunchly opposed “non-medical switching” by PBMs and health insurers – altering a patient’s drug therapy for reasons other than a drug’s efficacy, side effects or clinical outcome.

The Ohio State Medical Association is backing a bill that essentially would ban co-pay accumulators in the state. House Bill 135 was approved 16-0 on March 16 by the House Health Committee. However in late May, Taylor Jach, spokeswoman for House Speaker Bob Cupp, said the measure hasn’t gone to the full House because “members are continuing to work on a couple remaining issues.”

Even if it gets through the House, its future in the Senate is unknown.

“Practices like co-pay accumulators can have a devastating impact,” testified the OSMA’s senior director of government relations, Monica Hueckel.

Monica Hueckel, senior director of government relations for the Ohio State Medical Association

“Patients often do not even know about these policies until the (drug maker’s) coupons are no longer usable. As you can imagine, for patients with expensive medications and/or high-deductible health plans, the impact is disastrous.”

The legislation would still allow co-pay accumulators in which a generic version of a brand-name drug exists, unless the patient’s physician prescribes the more expensive brand-name drug as medically necessary.

Former state Rep. Randi Clites, a Democrat from Ravenna who is now policy director for the Ohio Bleeding Disorders Council, said that nine out of 10 insurers on the Affordable Care Act exchange in the Buckeye State now have some form of accumulator program that prevents co-pay assistance from counting toward deductibles and out-of-pocket costs.

Randi Clites of Ravenna, with husband, Mike, and son, Colton, kicks off her successful 2017 campaign for the Ohio House.

Clites – whose son, Colton, now 19, was born with severe hemophilia – noted that the average cost of treating that condition “is easily $400,000 a year. There is no generic for his treatment, and costs between similar products are comparable. We would have never made it without assistance programs over the years.”

Bipartisan bill essentially would ban co-pay accumulators in Ohio

The proposal to virtually end the use of co-pay accumulators has bipartisan sponsorship from Republican Rep. Susan Manchester of Waynesfield in northwestern Ohio and Democratic Rep. Thomas West of Canton.

Ohio state Rep. Thomas West, D Canton, speaking at an Ohio Promise rally in his hometown.

“This bill strives to protect patients who are being blindsided by unfair policies when learning they owe thousands of dollars because of unmet deductibles,” Manchester said.

Susan Manchester, R Waynesfield, talks with Ohio House colleagues when the legislature reconvened at the beginning of 2019.

Similar bans already have passed in Arizona, Illinois, Virginia and West Virginia, with legislation under consideration in Indiana, Kentucky and North Carolina, she said.

West said, “I’ve heard stories of patients rationing drugs or going without a dose to make their prescriptions last longer. No one should be put in this position, caught between a rock and a hard place. A constituent of mine with a rare bleeding disorder has lived this experience, along with countless others across our state.”

A who’s who of health advocates are backing the Ohio proposal, from Akron Children’s Hospital and the National Alliance on Mental Illness to the American Academy of Pediatrics and the Susan G. Komen breast-cancer-fighting organization.

Logos of organizations supporting HB 135, which would ban co-pay accumulators.

Ohioans tell how they were personally affected by co-pay accumulators

Several Ohioans testified in March about how they were personally affected by co-pay accumulators:

• Jenna Hoffman of Canton said she uses the drug Humate-P to treat her von Willebrand’s Disease, a rare, severe bleeding disorder for which treatment costs $4,300 per dose. “There is no generic or cheaper version of this intravenous medication. I rely on manufacturer copay cards to help pay for my life-saving medication, but insurance company co-pay accumulator policies have made my medication difficult to afford.”

Jenna Hoffman of Canton, who suffers from a rare bleeding disorder that requires treatment with an expensive specialty drug, testifies March 9 before the Ohio House Health Committee in favor of a bill to ban co-pay accumulators

• Nikki Snyder of Canfield has multiple sclerosis, as does her mother. “This new rule had been buried in the fine print of my health-insurance policy and I was not aware of the change. It is frustrating that insurers get to keep both the assistance payment and any co-pays paid directly by me while in the deductible phase – it is a double-dip that jeopardizes the health of patients. …

“My annual medication costs are over $100,000, and not being able to use any patient assistance toward my co-pay is a financial hardship to say the least.”

• Robbie Huston of Cincinnati didn’t know for years that she had Acromegaly, a rare hormonal disorder caused by a tumor on the pituitary gland producing excess growth hormone. Her treatment works, but it costs about $7,500 per shot.

“I was so relieved when I found out about the co-pay assistance program. It would cover my out-of-pocket expenses up to $20,000 a year,” she testified. Now that the $20,000 in effect has been taken away by her health insurer, she has stopped taking her medicine regularly because of the cost.

“If I can’t get my medication, I will eventually become disabled in a very slow and painful way. Then I will have to go on public assistance. I’ll lose everything.”

Sharon Lamberton, a deputy vice president with PhRMA, said the organization of more than 33 biopharmaceutical companies strongly opposes the accumulators because they so often result in an unexpected bill of possibly thousands of dollars for patients – who, like Huston, may then give up taking the medication they need.

“The reason for that? It is simply because they were later informed that, while the insurer accepted the assistance when presented by patients at the pharmacy counter, it did not apply the value of the assistance toward the patient’s mandated co-payment, co-insurance, or deductible requirements. I do not believe anyone would believe that policy is in the best interest of patients.”

New drugs worked; insurer says they aren’t a ‘medical necessity’

At the Madison Avenue Pharmacy in Springfield, which provided the Prolia shots for Julie Turner for $3,500 each, instead of the $5,000 each the local hospital was charging, patient care specialist Erin Phillips says people with all sorts of maladies are going through the same battle as Turner.

Some have rheumatoid arthritis, others psoriasis or high cholesterol that can’t be corrected by statins. All are complicated ailments that can be treated only with expensive, brand-name specialty drugs – as opposed to radically cheaper generics.

“I know what hoops people have to jump through,” she said.

Erin Phillips assists customers such as Julie Turner with navigating the process of dealing with health insurance and drug companies in her Patient Care Specialist role at Madison Avenue Pharmacy in Springfield, west of Columbus.

In fact, Phillips has done it so often that she has the routine down by now: Call for approval if the drug the patient needs is not on the formulary set by pharmacy benefit managers for the health insurer. (A formulary is the list of drugs the insurance will cover.)

When that’s denied – and it virtually always is – file an appeal. After that’s turned down, appeal again.

Once rejected for a third time, the patient has a fighting chance: The next appeal usually receives consideration from people outside the insurance company.

Still, Phillips said, the chances of winning approval from the health insurer even at this stage is 50-50 at best.

“It can be months of work,” she said. “They can just do whatever they want, and there’s no repercussions.”

Madison Avenue Pharmacy in Springfield, Ohio.

A Health Affairs blog by University of California associate professor Alice J. Chen and others noted, “For patients with rapidly progressive diseases, these delays can be life-threatening.”

One of the most frustrating cases for Phillips involved a patient who battled agonizing migraines for 13 years.

“She was on every medication you can imagine,” Phillips said.

At last, she found one that worked after getting a grant from a drug maker that made it affordable. The severe headaches dropped from daily occurrences to happening just five times a month.

But the insurance company wouldn’t cover it, Phillips said, saying it did not meet the required threshold of “medical necessity.”

‘A choice whether they have the best care or what they can afford’

Turner, now 63, said she, too, received no sympathy.

“I was told during one of my calls to the insurance company, insurance is changing, and we have to become better consumers,” she remembered. “I said, ‘What do you think I’m doing?'”

She is bewildered that she gets no credit for using the drug company grant to help cover her cost, because “the insurance company is still getting the money.”

Indeed, a study by the AIDS Foundation last year found that “insurers profit by keeping the co-pay assistance funds. This double-dipping comes at the patient’s expense. … only adding more financial strain for patients who may be facing hardships due to the coronavirus pandemic’s impact on jobs and family budgets.”

When Turner began treatments back in the 1970s, they were almost entirely covered by the robust insurance policy of her father, a Springfield firefighter.

But the aggressive treatment was traumatic for the high schooler who started out merely wondering why she got so tired that she couldn’t practice with the marching band.

“I swung from this mighty 17-year-old that could handle anything that was thrown at her to this scared little girl who wanted to crawl into my mother’s arms for safety,” she said.

About 25 years later, cancer would claim her mother’s life a few short weeks after the illness was diagnosed.

Turner’s treatment also was covered by the health plan she had as treasurer for decades at her alma mater, Clark Shawnee High School near Springfield.

She needed the help. Her spleen was removed during the initial rounds of her battle against cancer. With little ability to filter viruses or infections, she easily contracted many illnesses floating around her in ensuing years.

The intense cancer treatment – primitive by today’s standards – left other lasting effects. The chemo damaged her heart. The radiation, along with making her unable to bear children and causing fragile bones, left scar tissue on her lungs.

But she says she’s had a good life. She got married and she and husband, Chuck Wickline, adopted a daughter, Jodie.

“I’m so blessed to be here,” Turner said.

Julie Turner says her insurance company told her she had to become a better consumer.

She retired in 2016, and the couple moved to a condo in Vandalia, near Dayton. That’s when she went on a “bridge” health insurance policy with Aetna through the School Employees Retirement System of Ohio to get her to Medicare in a couple of years.

Turner has become an advocate for the American Cancer Society, where she hears stories of others enduring the same struggle she has in a country overtaken by health-care consolidation.

“Unfortunately, for the patients that are going through active treatment now, they have to make a choice whether they have the best care or what they can afford,” she said.

Her reward comes from moments like the one at a Relay for Life in Fayette County. After hearing Turner’s story, a mother with a teen-age daughter fighting cancer came up to her with a simple message:

“You’ve given us hope.”

A grant from the nonpartisan, nonprofit National Institute for Health Care Management helped pay for research for this story; the organization had no input on its content. 

drowland@dispatch.com

@darreldrowland

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With first Louisiana location now open, Eleanor Health brings compassionate, whole-person care for addiction and mental health to Baton Rouge | Sponsored: Eleanor Health

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Editor’s note

This article is brought to you by Eleanor Health.

A nationally recognized team that specializes in the treatment of addictions and mental illnesses has landed in Baton Rouge. The new clinic will offer on-site services and reach the entire state of Louisiana with a virtual care platform.

“I believe that when prospective members join us, they are ready to make a life change,” said Julie Insyxiengmay, lead clinician at the Baton Rouge site. “Eleanor Health offers a number of services that set us apart from other substance use treatment programs. Every member who comes to our treatment because of their substance disorder has the opportunity to get involved with our care team at different levels of care: medication assistance provider, registered nurse, therapist, community recovery partner and member experience administrative specialist. At Eleanor Health, we believe in the harm reduction model that fully supports the autonomy of parishioners in their treatment. ”Holistic care is a key pillar that enables the interdisciplinary care team to develop personalized care that is tailored to the parishioner’s recovery goals . This approach promotes the best results specifically for the members.

Eleanor Health officially opened its Baton Rouge facility in February. This is the first Eleanor Health location in Louisiana. Additional locations are in Massachusetts, New Jersey, North Carolina, Ohio and Washington.

Eleanor Health’s services include drug therapy, counseling, mental health care, and more. They are intended for all people aged 16 and over who are struggling with or are affected by an addiction disease. Anyone who signs up for services is known as an Eleanor Health Community member because when you join their community you are a lifelong member.



Julie Insyxiengmay – Senior Clinician | Louisiana



What sets Eleanor Health apart from other companies is the individualized approach to stigma that begins as soon as someone calls. Anyone can contact the staff on behalf of themselves or a loved one to begin the journey. This step usually starts with the Access Team.

“Our access team is made up of Eleanor Health employees, not third parties or an automated system,” said Tylynn Mayo, Growth Marketing Associate at Eleanor Health. “When someone contacts us, they can sit down and have a real conversation with someone on our team.”

Wes Gonzales, director of operations at Eleanor Health, said these interpersonal connections are an integral part of the philosophy of offering personalized care that addresses all aspects of a person’s health.

“We really believe in a holistic approach,” he said. “We see ourselves as a psychiatric home for our members. This includes coordination with general practitioners and specialists to ensure that the needs of the members are met across the board. “

Insyxiengmay went on to say that Eleanor’s co-founders spent hours and hours researching to adopt this new model. Previous studies have shown that treating a person’s mental and emotional health is just as important as treating a physical addiction to a substance. The groundbreaking data we are now collating shows that the success of harm reduction with behavior therapy is key to long-term recovery. Harm Reduction is a practical strategy to reduce the negative effects of drug use on the member and their support system. With the growing opioid crisis, it is imperative that the industry analyze where programs to use substances have failed and adapt to more innovative practices.



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Westmoreland (Wes) Gonzales – Operations Director | Louisiana



“At Eleanor Health, we understand that mental health is closely related to drug addiction. Therefore, we offer evidence-based practices to ensure they understand their addiction process, engage in a harm reduction process, and learn to use coping strategies and strategies to confidently support their recovery. Therefore, at Eleanor Health, our mission is to help people affected by addiction live amazing lives.

The Baton Rouge Clinic already serves community members who use opioids and other substances. The members come from all backgrounds and from all walks of life. To help them stay on track, Gonzales said all Eleanor Health services are offered on an outpatient basis, with flexible scheduling and virtual treatment. We accept some major insurance plans like Medicare, Medicaid, and United Healthcare and offer affordable payment plans. We want to give as many members as possible the opportunity to imagine a different life.

“The flexibility we offer enables our members to get on with their lives and responsibilities, but also receive the care they need to manage their addiction,” he said. “You can receive drug treatment and services from in-house therapists, a community recovery partner for peer support, and a nurse care manager for general health. It’s about creating more positive interactions and reducing the stigma surrounding substance use disorder. We want people to feel comfortable and accepted with us. “

The Eleanor Health Baton Rouge Clinic is located at 3975 O’Neal Lane, Suite B. For more information, visit www.eleanorhealth.com, call 225-269-9646, or email gethelp@eleanorhealth.com .

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