Author Archives: Mollie Katz

Rebounding from the Impact of Multiple Sclerosis: The Champlin Family’s Story

Editor’s Note: Real World Healthcare will be taking a brief hiatus during the month of August. During this time, we’d like to share with you some of the compelling stories we’ve published about patients facing both medical and financial hardships.

 

Life has not been the same for Dee Champlin, her husband Mark and their two sons since Dee was diagnosed with multiple sclerosis (MS) in 2008. The disease has imperiled Dee’s vision, severely limited her walking and weakened her memory and speech. But she and her family have always found ways to bounce back.

Dee Champlin, receiving treatment for MS

Dee Champlin, receiving treatment for MS

Symptoms such as sensitivity to hot weather, temporary numbness and joint pain had been growing more and more common for Dee beginning in 1988.  But, as with many MS patients, it was eye problems that ultimately led doctors to the MS diagnosis 20 years after her symptoms first appeared.

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A Message from our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

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In one crisis, Dee suddenly began slurring her speech and drooling. Hours later, vision in her left eye started disappearing under what she described as a dark veil. A series of three ophthalmologists assessed the problem before determining she had bleeding inside the eye. This led to MS testing. Four tests, including an MRI and a spinal tap, all came back positive for MS, revealing 14 lesions on her brain at the time.

Mark describes a moment during one of Dee’s hospitalizations when he shifted from a negative attitude to a positive one that still guides the family.

Their challenges had hit him “like a punch to the gut,” he said. “Why us?” he thought. “Everything changed so fast. But then I thought, eventually we are going to get out of this hospital and go home. Things could be so much worse. With all the bad things that are happening to Dee, I don’t want to deal with my own negative attitude.”

That outlook has allowed the Champlins to absorb many changes in their lives as they cope with Dee’s health. Mark had been a self-employed truck driver but sold his semi and changed jobs to be near home after Dee had two health emergencies while he was on the road.

The couple moved from Nebraska to Lockport, N.Y., outside Buffalo, to live closer to their family for more support. Mark began working an overnight shift so he would be available to accompany Dee to medical appointments during the day.

They have both learned that MS produces good days and bad days. And on any given day, they know their plans may change, as Dee’s physical condition may vacillate from morning to afternoon.

Their sons, ages 7 and 2 when Dee’s illness was finally diagnosed, have adapted too. They pitch in at home, help out with laundry and even endure a dreaded chore — washing dishes — when their mom needs it. Their parents are attentive to addressing the boys’ concerns about Dee. They speak openly with them, but still encourage their kids to truly be kids with as normal a life as possible.

The Champlins’ latest rebound was receiving a HealthWell grant that allowed Dee to resume treatment with the only MS medication that has ever made a difference for her. Earlier, after two years of this treatment with daily injections, she received a letter from her insurance provider saying her drug costs had already exceeded the plan’s lifetime maximum. The letter concluded with this line: The cost outweighs the benefits.  “I’ll never forget that as long as I live,” Mark said.

Despite the complex and intensive medical care Dee has been through, the family takes comfort in knowing that Dee’s form of MS is not fatal and that they can continue fighting it. Returning to a previously effective drug should give Dee a better quality of life.

“So many find out they have a disease that gives them literally weeks or months to live,” Mark said. “They don’t get the ‘opportunity’ to push their loved one around in a wheelchair for the next 30 years. Luckily, I do!”

 

Categories: Cost-Savings, General

How HealthWell Foundation’s MS Fund Helped Charlie Get His Life Back on Track

Editor’s Note: Real World Healthcare will be taking a brief hiatus during the month of August. During this time, we’d like to share with you some of the compelling stories we’ve published about patients facing both medical and financial hardships.:

Charlie Barron

Charlie Barron

Charlie Barron was raised to set goals, make plans, get things done. But setting and meeting goals has become exceptionally hard since Charlie, 46, discovered he has multiple sclerosis.

Because of his MS, Charlie is unable to work and therefore struggles to pay for the expensive treatments he has needed since he was diagnosed in 2010, a decade after his symptoms first appeared. He received HealthWell Foundation grants in 2014 and 2015.

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A Note from Our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

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Before his diagnosis, this resident of DeKalb, Ga., had a career as a chef. On the job, he often stood 12-14 hours a day, despite a pins- and-needles sensation in his feet and numbness in his legs that went on for years. For a long time, he considered his physically demanding work the cause of his pain, yet his employer provided no health insurance.

Later, Charlie combined his cooking skills with his interest in fitness to open his own business.  As a personal trainer, he led clients in morning workouts in their homes, then cooked them a healthy breakfast in their kitchens. At that point, he bought himself health insurance.

However, his insurance policies have been unreliable in covering his medications. For instance, his first medication was covered, but when it proved ineffective for him, his insurance company declined to pay for the next prescribed treatment. Moving from private insurance, he obtained Medicare coverage through disability and thought those challenges would change. Recently his doctor recommended adding a second drug to Charlie’s treatment plan which has staved off relapses for the last two years, but the out-of-pocket expense was still unmanageable.

In a note thanking the Foundation for its financial assistance, Charlie described how he felt when he found out the cost of his care.  “Even though I was ready to physically fight to get my life back from MS, my finances were not so ready for battle,” he wrote. “I learned that the medication my doctor prescribed would cost upwards of $1,100 per month. I felt that I had been knocked down before I even had a chance to throw the first punch.”

“The HealthWell Foundation has given me the peace of mind to focus my energy on fighting MS and encouraging others to do the same,” Charlie’s letter said.  He continues learning about MS at a local MS center, takes physical therapy and has participated in activities such as a painting class with others coping with MS.

Social media connects him with additional people with the illness. Hearing about others’ experiences with MS, giving them encouragement or simply offering a kind word to lift their spirits gives Charlie strength.

Benefiting from the supportive care of his wife, brother-in-law and 13-year-old daughter, he urges other people with MS to seek support from family or a strong support group.  For caregivers, he recommends researching MS through the Internet, books or the MS Society to know what to expect.

Not comparing the present with the past is important to him as well. “It’s not about what you used to do, it’s about what you are trying to do now,” Charlie says.

Are you an MS patient like Charlie? How are you coping with the disease and its treatment costs? Let us know in the comments.

 

Rebounding from the Impact of Multiple Sclerosis: The Champlin Family’s Story

Life has not been the same for Dee Champlin, her husband Mark and their two sons since Dee was diagnosed with multiple sclerosis (MS) in 2008. The disease has imperiled Dee’s vision, severely limited her walking and weakened her memory and speech. But she and her family have always found ways to bounce back.

Dee Champlin, receiving treatment for MS

Dee Champlin, receiving treatment for MS

Symptoms such as sensitivity to hot weather, temporary numbness and joint pain had been growing more and more common for Dee beginning in 1988.  But, as with many MS patients, it was eye problems that ultimately led doctors to the MS diagnosis 20 years after her symptoms first appeared.

********************************************************************************

A Message from our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

********************************************************************************

In one crisis, Dee suddenly began slurring her speech and drooling. Hours later, vision in her left eye started disappearing under what she described as a dark veil. A series of three ophthalmologists assessed the problem before determining she had bleeding inside the eye. This led to MS testing. Four tests, including an MRI and a spinal tap, all came back positive for MS, revealing 14 lesions on her brain at the time.

Mark describes a moment during one of Dee’s hospitalizations when he shifted from a negative attitude to a positive one that still guides the family.

Their challenges had hit him “like a punch to the gut,” he said. “Why us?” he thought. “Everything changed so fast. But then I thought, eventually we are going to get out of this hospital and go home. Things could be so much worse. With all the bad things that are happening to Dee, I don’t want to deal with my own negative attitude.”

That outlook has allowed the Champlins to absorb many changes in their lives as they cope with Dee’s health. Mark had been a self-employed truck driver but sold his semi and changed jobs to be near home after Dee had two health emergencies while he was on the road.

The couple moved from Nebraska to Lockport, N.Y., outside Buffalo, to live closer to their family for more support. Mark began working an overnight shift so he would be available to accompany Dee to medical appointments during the day.

They have both learned that MS produces good days and bad days. And on any given day, they know their plans may change, as Dee’s physical condition may vacillate from morning to afternoon.

Their sons, ages 7 and 2 when Dee’s illness was finally diagnosed, have adapted too. They pitch in at home, help out with laundry and even endure a dreaded chore — washing dishes — when their mom needs it. Their parents are attentive to addressing the boys’ concerns about Dee. They speak openly with them, but still encourage their kids to truly be kids with as normal a life as possible.

The Champlins’ latest rebound was receiving a HealthWell grant that allowed Dee to resume treatment with the only MS medication that has ever made a difference for her. Earlier, after two years of this treatment with daily injections, she received a letter from her insurance provider saying her drug costs had already exceeded the plan’s lifetime maximum. The letter concluded with this line: The cost outweighs the benefits.  “I’ll never forget that as long as I live,” Mark said.

Despite the complex and intensive medical care Dee has been through, the family takes comfort in knowing that Dee’s form of MS is not fatal and that they can continue fighting it. Returning to a previously effective drug should give Dee a better quality of life.

“So many find out they have a disease that gives them literally weeks or months to live,” Mark said. “They don’t get the ‘opportunity’ to push their loved one around in a wheelchair for the next 30 years. Luckily, I do!”

 

Are Patients Talking and Are Doctors Listening?

Rheumatologist Daniel J. Wallace, M.D., who has treated more than 2,000 people with lupus, holds what he calls a counseling session with each patient he diagnoses with the disease. As he writes in his book, The Lupus Book, he uses these sessions to educate patients about their illness and explain their treatment. This step, he writes, is essential to establishing a good long-term relationship with a new patient.

Mollie Katz

Mollie Katz

Dr. Wallace’s approach is an example of patient-centered care, a principle widely considered vital to quality health care.

The Institute of Medicine defines patient-centeredness as “care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences.”  The definition also includes providing patients with “the education and support they need to make decisions and participate in their own care.”

Barriers to Communication and Trust 

Because patient-centered care hinges on trust between patients and their doctors, many medical societies, patient advocacy groups and health care institutions have focused on ways to build trust. Their solutions always emphasize better communication, and physicians and other members of the health care team are taught to listen carefully and empathetically to patients.

Yet barriers to good communication persist.

Findings issued in February about multiple sclerosis (MS) care, for instance, have shown that both neurologists and patients can be hesitant to discuss important issues, even those central to MS.

The State of MS Report released by the State of MS Consortium found that in the U.S. and four western European countries, 19 percent of MS patients said they were uncomfortable talking about walking problems and tremors.

With more sensitive and private issues, patients expressed even more hesitation. Concerns about sexual difficulties left 54 percent of patients reluctant to talk to their doctors. Twenty-eight percent were uneasy discussing bowel and bladder problems, and 21 percent were uncomfortable discussing cognitive or memory issues.

In the study, physicians considered time pressures a barrier to good communication. Patients agreed, but said not wanting to be labelled “difficult” by their doctors was a bigger hurdle.  

Testing Improvements 

Researching ways to strengthen communication between health care providers and patients is a priority of the Patient Centered Outcomes Research Institute (PCORI), which funds research on patient-centered care. PCORI is a nonprofit, non-governmental body established by Congress as a provision of the Affordable Care Act.

One PCORI-funded study is testing whether involving patients in decisions about their treatment will improve their use of prescribed drugs. According to the researchers in Boston, nearly one-third of patients don’t fill new prescriptions.

Sometimes that’s because they disagree with their doctors on the need for medicines. Some patients fear the side effects or toxicity of a drug. Some have incorrect perceptions of effective care. Others lack social or financial support needed to follow prescribed treatment.

In the study, patients and providers will consider the available scientific evidence, as well as the patient’s values and preferences, and decide together on treatment.

Dr. Wallace, the lupus specialist, acknowledged in his book that physicians may harm their relationships with patients by acting too judgmental, intimidating and hard to approach, leaving patients afraid to discuss serious issues about their treatment. Patients, too, he says, can be challenging to work with when they hesitate to trust their doctors because they are hostile, anxious or depressed beyond the level that would typically be found in someone with lupus.

He urged patients to be unafraid to state their concerns clearly and to get a second opinion if they wish, knowing this should not imperil the relationship with the doctor. His description of a good doctor-patient relationship includes open communication, mutual honesty and respect and understanding of one another’s lifestyles and limitations.

“A patient’s relationship with his or her doctor is akin to a complex commitment,” he writes. “The doctor is half of the ticket to good health, and both sides have to put up with each other’s idiosyncrasies.”

Have you ever avoided difficult discussions with your physician about your care? Tell us why and how you were able to overcome the situation in the comments below.

How HealthWell Foundation’s MS Fund Helped Charlie Get His Life Back on Track

A Note from Our Sponsor: March is National MS Education and Awareness Month. Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

Charlie Barron was raised to set goals, make plans, get things done. But setting and meeting goals has become exceptionally hard since Charlie, 46, discovered he has multiple sclerosis.

Charlie Barron

Charlie Barron

Because of his MS, Charlie is unable to work and therefore struggles to pay for the expensive treatments he has needed since he was diagnosed in 2010, a decade after his symptoms first appeared. He received HealthWell Foundation grants in 2014 and 2015.

Before his diagnosis, this resident of DeKalb, Ga., had a career as a chef. On the job, he often stood 12-14 hours a day, despite a pins- and-needles sensation in his feet and numbness in his legs that went on for years. For a long time, he considered his physically demanding work the cause of his pain, yet his employer provided no health insurance.

Later, Charlie combined his cooking skills with his interest in fitness to open his own business.  As a personal trainer, he led clients in morning workouts in their homes, then cooked them a healthy breakfast in their kitchens. At that point, he bought himself health insurance.

However, his insurance policies have been unreliable in covering his medications. For instance, his first medication was covered, but when it proved ineffective for him, his insurance company declined to pay for the next prescribed treatment. Moving from private insurance, he obtained Medicare coverage through disability and thought those challenges would change. Recently his doctor recommended adding a second drug to Charlie’s treatment plan which has staved off relapses for the last two years, but the out-of-pocket expense was still unmanageable.

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Editor’s Note: RealWorldHealthcare turns 2 today! To help us celebrate our anniversary, we think there’s no better gift than a donation to our sponsor, the HealthWell Foundation. Learn how you can help support patients in need. Click here.

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In a note thanking the Foundation for its financial assistance, Charlie described how he felt when he found out the cost of his care.  “Even though I was ready to physically fight to get my life back from MS, my finances were not so ready for battle,” he wrote. “I learned that the medication my doctor prescribed would cost upwards of $1,100 per month. I felt that I had been knocked down before I even had a chance to throw the first punch.”

“The HealthWell Foundation has given me the peace of mind to focus my energy on fighting MS and encouraging others to do the same,” Charlie’s letter said.  He continues learning about MS at a local MS center, takes physical therapy and has participated in activities such as a painting class with others coping with MS.

Social media connects him with additional people with the illness. Hearing about others’ experiences with MS, giving them encouragement or simply offering a kind word to lift their spirits gives Charlie strength.

Benefiting from the supportive care of his wife, brother-in-law and 13-year-old daughter, he urges other people with MS to seek support from family or a strong support group.  For caregivers, he recommends researching MS through the Internet, books or the MS Society to know what to expect.

Not comparing the present with the past is important to him as well. “It’s not about what you used to do, it’s about what you are trying to do now,” Charlie says.

Are you an MS patient like Charlie? How are you coping with the disease and its treatment costs? Let us know in the comments.

 

Categories: Cost-Savings, General