Real World Health Care Blog

Tag Archives: healthwell foundation

New Series: Big Data in Health Care

Welcome to 2016! The staff and sponsors of Real World Health Care wish you all a Happy & Healthy New Year. We look forward to another year of sharing ideas and insights from researchers on the forefront of real-world medical breakthroughs.

Next week, we’ll be kicking off a new blog series on implications of the use of big data in health care. From predicting disease and identifying targeted therapies and cures to improving our overall quality of life, big data is transforming the way health care decisions are made and care is delivered.

Over the next couple months, our guest bloggers will address issues including:

  • The use of analytics to identify and manage high-risk and high-cost patients.
  • How to extract clinical value from biomedical big data.
  • The use of big data to understand the human condition.
  • The role of large prospective randomized trials in the era of big data.
  • Distinctions between research and operational data within a “continuously learning” health system.
  • Implications of big data science for nurse leaders.

We look forward to sharing these expert views with all of you and hope that Real World Health Care continues to be a source of useful information throughout 2016.

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.

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

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!”

 

Categories: Cost-Savings, General

A Tale of Two Liver Transplants: Altruistic Compassion for a Compassionate Altruist

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.

 

“Talk about your life changing in an instant,” Helen said, remembering her first diagnosis of acute liver failure. The doctor told her family there was nothing more to be done, and she was given two weeks to live.

Helen Bozzo

Helen Bozzo

Helen Bozzo had spent most of her time being a mother. Her husband, a farmer, worked long hours in the fields in their rural California farm, and early on in their marriage the couple decided that she would stay home to care for their three children. She was the “homeroom mother,” volunteering in classes and with the school’s administration, PTA and athletics department. Helen’s passion was helping others, and not just in the school.

Eventually moving into the town, Helen enjoyed taking others into her home – her children’s friends, her son’s comrades from the Marine Corps – she always had a full house and enjoyed taking these friends in like her family.

“I enjoyed cooking for everyone, reading, knitting and gardening,” she said. “Still things I enjoy doing today, but loving and helping people is my number one pleasure in life.”

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

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.

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

Helen had returned from what she remembers as a great family vacation to Disneyland when she began to get ill quickly. Her doctor had her admitted to her local hospital where, after receiving tests and specialists’ opinions, she was given that shocking diagnosis.

But her family could not accept that. They sought a second opinion, and got Helen an appointment at a local cancer center. Here she was evaluated and admitted to the hospital, where she spent a month undergoing “every test known to man” and waiting desperately for an answer. All that was clear was that her liver and now her kidneys were failing. She was placed on dialysis.

“I was going downhill fast,” Helen recalls.

After much deliberation, Helen’s doctors decided to put her on the transplant list. Eight days later, on April 29, 2007, a suitable liver was available and she had the transplant. Her health began to improve immediately.

More than a third of people on the transplant list die each year waiting for an organ, according to Helen. She would later come to realize just how lucky she was, saying, “The odds of finding a match in such an acute critical case as mine are astronomical,” she said. “The doctors told me later that I was within hours of death.”

For the time being, Helen was in the clear. She had great insurance and her payment plan kept her bills covered. Though she was in debt, she was able to keep her medications coming. Considering how hard her recovery was, that was a very good thing. It took Helen a year to be able to walk again, but she eventually made a full recovery.

For the next four years, things went well for Helen. She became active again, and that meant re-embracing her spirit of altruism. She became active in the organ donor/recipient community, particularly in a liver transplant support group in which she helps others through the process of getting a transplant. She became a California Donate Life Ambassador, speaking at various organizations about the importance of becoming an organ donor. What energy Helen had, she gave to others.

Shortly before her third walk with the American Liver Foundation’s “Walk for Life,” Helen decided she had to see her doctor. She had started feeling tired after a recent road trip with a friend, and now she was feeling worse. To her dismay, the doctor’s test showed some major problems. After ten days of testing in the hospital, her liver was failing again. She was placed on the “Status 1” list in five states, the top of the transplant list.

“It was life or certain death,” Helen said.

Three days later, on September 26, 2011, Helen had her second liver transplant.

Along with this transplant, however, came three expensive new medications that her insurance would not cover. Charging thousands of dollars to her credit card every month, Helen was becoming massively over-extended. She called every agency she could, but no one could help her until she found the HealthWell Foundation. HealthWell is a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog). Helen qualified for a grant that helped cover her copays for her medications.

Now, Helen and her husband are back on their feet. As always, Helen turned her attention to paying it forward to others as soon as she could, donating to the HealthWell Foundation, continuing to support transplant recipients and raising over $25,000 in her walks for research and awareness of liver disease and failure. She spends time with her ever-growing family and her husband, with whom she just celebrated 40 years of marriage. When she’s not helping others or enjoying the love of her family, she still likes to knit, garden and cook, and hopes to see all 50 states one day.

“We are so very thankful to the HealthWell Foundation,” Helen said. “I know of families in our transplant support group that have lost their homes because they were in the same situation we were in. Thankfully we found the HealthWell Foundation in time. The home we had worked so hard for, we were able to keep. The peace of mind in knowing that every month when I went to the pharmacy I would have the money to pay for my medications meant everything to our family. The stress was gone and I could focus on my recovery in peace.”

We at RealWorldHealthCare are thrilled to see patients like Helen in such good places, doing such wonderful things. Please share your thoughts in the comment section.

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.

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

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.

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

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!”

 

Why We Give to HealthWell Foundation – and Why You Should Too

As the head of a communications strategy shop that helps clients in science, technology, and health care, I encounter a seemingly endless number of organizations that want to do good for society and the planet.  Why then have the WHITECOAT Strategies employees – who serve as editors of Real World Health Care (RWHC) Blog – decided that the HealthWell Foundation should be one of our two charter charities, as our firm becomes a social enterprise in 2014?

David Sheon

David Sheon

Before I answer that, just what is a social enterprise?

A social enterprise is an organization that applies business strategies to maximize improvements in human and environmental well-being, rather than maximizing profits for shareholders.

Social enterprises can be structured as for-profit or non-profit organizations, but their focus is using their proceeds to do good.

We decided that organizations seeking communications firms would like to know that revenue from their work is going to help society.  And our employees like to know that too.

When we made the decision to become a social enterprise, we thought about the impact of our work globally and locally.  And that’s how we arrived at helping CA Bikes, as well as the HealthWell Foundation.

CA Bikes is a nonprofit organization founded by Chris Ategeka, a native of Uganda. The oldest of five children, Chris became an orphan and head of his household at an early age after losing both his parents to HIV/AIDS. After years of poverty and laboring in the fields, a miracle happened, as Chris says, when a woman from the United States started an organization called Y.E.S. Uganda near his village, took him in, and supported him through school. Now, Chris holds a BS and an MS in Mechanical Engineering from the University of California, Berkeley.

Many people living in rural Africa have no access to emergency medical services, and given that the nearest health clinic or hospital is often miles away, this results in needless suffering and deaths. CA Bikes builds and distributes bicycle and motorcycle ambulances to rural African villages and trains partners in their maintenance and use to provide access to life-saving care during medical emergencies. For more information about CA Bikes and to help support their work, click here.

The WHITECOAT team is honored to help Chris fulfill the mission of CA Bikes.

WHITECOAT’s history with the HealthWell Foundation dates to a discussion one of my staff members and I had over three years ago.  She told me that her best friend from college had been diagnosed with a brain tumor. He had insurance through his job, which stuck with him through the medical emergency.  His wife had been laid off of her job a month before the diagnosis.  The emotional toll of the diagnosis was awful.  I knew the couple and their children would find their own way to deal with that and there was nothing we could do. But I felt that perhaps we could do something more to find them financial support.

One call to the HealthWell Foundation was all that was needed.  After reviewing financial records and evaluating the situation, the Foundation tapped a fund reserved for medical emergencies that reimbursed not only for the co-pays associated with medication, but also for the cost of the monthly health insurance premium and related medical expenses.  This program has now transformed into the Emergency Cancer Relief Fund, which WHITECOAT is proud to help launch for HealthWell.

HealthWell has awarded more than 265,000 grants to patients in over 40 disease categories, making a profound difference to over 165,000 people faced with difficult medical circumstances in the U.S.

I hope that at this time of giving, you’ll join me and the WHITECOAT staff by donating to the HealthWell Foundation.

Categories: Cost-Savings

When the Health Care Blogger Becomes the Cancer Patient

The call came the day after my 48th birthday in April.

“The radiologist saw something suspicious on your mammogram from last week…an undetermined mass,” said the voice on the other end of the phone. “We’d like you to come in for an ultrasound so we can see better.”

Linda Barlow

Linda Barlow

During the ultrasound they assured me that it was probably nothing…that in most cases, it’s a benign lump and not cancer. Surely, I thought, as I scheduled a needle biopsy for a few days later, this would be the case for me as well.

But it was not the case. Once the results from the biopsy came back, I realized that I had become a cancer patient. I was now part of a community of more than one million other Americans who are diagnosed with cancer each year.

The days and weeks after that ultrasound and needle biopsy became a whirlwind of doctor’s appointments, tests, and procedures, as well as surgery to remove the lump in my breast, along with several lymph nodes. As of this writing, I’m undergoing six weeks of daily radiation treatments, and soon will be starting drug therapies that will last for at least five and up to 15 years.

Just when I started to recover from the surgery, the bills started to roll in. I have what I thought was pretty good (but expensive from a premium standpoint) medical coverage under my husband’s workplace plan. But even with premiums that are far higher this year than we’ve ever had to pay in the past, the system demanded more of our money:

  • $334.43 for one ultrasound
  • $106.04 for another ultrasound
  • $35.49 for an oncologist office visit
  • $131.15 for a nuclear medicine injection prior to my sentinel node removal
  • $421.80 for my lumpectomy
  • $468.61 for lumpectomy prep work
  • $181 for the surgeon who removed the lump
  • $60 for post-surgery physical therapy
  • $737.45 for oncotype diagnosis test

These are just a few examples and don’t include charges relating to the 30 radiation treatments I’ll be receiving or the genetic testing being done (since cancer runs in the family).

While these out of pocket costs are certainly hard to swallow – I can think of a hundred other things I’d rather spend my money on – for my family, they are doable. We won’t have to skip a mortgage payment or a utility bill. We won’t have to dip into a child’s college tuition fund. We certainly won’t have to worry about having enough money for food.

But I know – from my work on this blog and with its main sponsor, the HealthWell Foundation – that many families living with cancer aren’t so lucky.

I had the opportunity to help HealthWell create a White Paper, “When Health Insurance is Not Enough: How Charitable Copayment Assistance Organizations Enhance Patient Access to Care,” which investigated the devastating effects of not being able to afford needed treatments for chronic and life-altering medical conditions. For some individuals and families, out-of-pocket expenses including deductibles, copayments and coinsurance can total thousands of dollars each month – much more than many people earn.

That’s not the case for me. I’m one of the lucky ones.

“I’m lucky” is a statement you don’t often hear from cancer patients, but it’s how I feel about my situation. I’m lucky that my cancer was caught early by an astute reading of my mammogram. I’m lucky that my specific type of cancer was deemed “curable” and didn’t spread to my lymph nodes or other organs. I’m lucky that my job as a freelance writer gives me the flexibility to go to doctor’s appointments when needed. And I’m lucky to be in a two-income household with no kids and the easy ability to pay our bills. For now.

Of course, this could all change in a heartbeat. My freelance assignments could dry up, which would impact our income. My husband could lose his job or become disabled. We could be hit with an unexpected and costly disaster like a house fire or a tree crashing through our roof. The cancer could come back.

I am, in effect, a heartbeat away from being in a position to need real financial help.

If I need help, I’m thankful that charitable copayment assistance foundations like the HealthWell Foundation exist. Cancer isn’t something you can put on the back burner until the time or money is right. Treatment is costly. Premiums and copayments are high. For the 29 million Americans with limited incomes and/or inadequate insurance, the toll can be devastating – physically, emotionally and financially.

That’s why I’m calling on readers of this blog to help. Your donation to the HealthWell Foundation, the American Cancer Society or other charitable assistance foundations really will make a difference. Maybe not for me personally, but certainly for the millions who aren’t as lucky as me.

Categories: Cost-Savings