Real World Health Care Blog

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Patient of the Month: Sharon Harris Survives Lupus and Pays It Forward

Sharon Harris remembers February of 2002. She remembers where she was, what she was wearing, and what she was feeling. Most of all, she remembers the day she was diagnosed with lupus.

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Sharon Harris, lupus awareness advocate and founder of Lupus Detroit

May is Lupus Awareness Month. Lupus is a chronic inflammatory disease that occurs when the body’s immune system is unable to distinguish between foreign illnesses and the body’s own tissue and organs. Inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart, lungs, and other organs. Although there is no cure for lupus, there are numerous medications that can alleviate its symptoms.

Sharon had just graduated from Florida A&M University in Tallahassee when she received her diagnosis. “I was 22 at the time, fresh out of college,” Sharon said. “You’re taught while you’re growing up to learn your manners, respect your elders, and get a good education. No one tells you about an autoimmune disease that you will have for the rest of your life.”

Nor had anyone told her what having lupus would entail. “I immediately went into battle mode,” she said. “I had graduated from college. I had traveled 1200 miles from my family to make my journalism degree happen, and I was going to fight.”

“But, as soon as I got my fight on, that’s when all the pain started.”

Sharon experienced a flare-up of symptoms. It would be an understatement to say that the rest of that winter was difficult for her. Her hair began to fall out. She suffered from constant fatigue and pain. In the month of February alone, Sharon lost thirty pounds.

After beginning treatment on several different medications, Sharon started feeling better by that summer. One Wednesday during a Bible study, Sharon was asked what she would do if it were her last day on Earth.

“I said I wanted to see the world,” Sharon said. “Because if lupus was going to take me out, then it was going come and find me in Paris on the Eiffel Tower or on a beach in the Virgin Islands.”

By chance, Northwest Airlines (now Delta) had put out an ad to recruit flight attendants. It was a dream job for Sharon. The job provided her with better insurance, and on her off days she could fly to any location on Northwest’s roster. Just as she had hoped, Sharon got a chance to see the world. Amazingly, Sharon started to find that her experience with lupus was helping her have a healthier mindset. “It really made me think of life in a whole different way, and just literally live. Just really get out there and live,” she said.

Sharon eventually moved back to Tallahassee, opening an eyelash parlor and holding down an office job. At that point, she experienced another flare-up. “In October in Tallahassee it is still 100 degrees outside, and I was wearing a wool coat,” Sharon said. “I was so sick.” Sharon packed up and returned to her hometown: Detroit, MI.

Now, too sick to work and without a job, Sharon did not have health insurance. The lupus was attacking her kidneys and the medicine that she was prescribed cost upwards of $3,000 for a month’s supply. Despite pinching pennies to afford her daughter’s medication, Sharon’s mother was willing to refinance her house to save her only child’s life.

That’s when Sharon’s luck shifted. One day, she visited a local lupus organization with the intention of buying a t-shirt, and she ended up walking out with a new job. Her new public relations position did not include benefits but being employed allowed her to purchase health insurance.

Although she had insurance, her share of the payments for her four medications was unaffordable; one of the therapies alone cost more than $1,000 per month. That’s when Sharon found out about the HealthWell Foundation from a Google Alert. 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).

“Literally, HealthWell saved my life,” Sharon said. “I didn’t have to incur any debt, my mother didn’t have to refinance her house, and HealthWell saved the day.”

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And Sharon wanted to save the day for others like her. She has become a leading activist for lupus awareness, starting her own advocacy group called Lupus Detroit, which offers lupus patients emergency grants. Sharon points out that there are two colors that are used for lupus awareness, orange and purple. She opted for orange for her organization because the color is “louder” and garners more attention. “Lupus needs all of the attention that it can get,” Sharon said.

Sharon is currently in remission and has been doing well since receiving a grant from HealthWell in 2011 that allowed her to afford her medications. “I was inspired by the work that HealthWell does to help people with their medications,” she said. “I just don’t believe that someone should have to choose between paying for their medication and feeding their children.”

And neither do we, Sharon. Keep up the excellent work.

If you are inspired to help, consider raising awareness during Lupus Awareness Month and showing your support. Here are some suggestions:

  • Make a donation to HealthWell’s SLE Fund in honor of a family member or loved one who is battling lupus.
  • Celebrate World Lupus Day on Saturday, May 10th.
  • Put on Purple on Friday, May 16th and visit The Lupus Foundation of America’s website at www.lupus.org to learn how you can show your support.
  • Find your local Lupus Foundation of America chapter to learn about activities in your area.

Has lupus touched your life? Do you have plans to show support during Lupus Awareness Month? Share your story in the comments section.

Categories: Cost-Savings

Patient of the Month: Charles Fazio’s recovery from heart bypass surgery, kidney failure, and financial crisis

Patient of the Month is a new regular feature from Real World Health Care to illustrate the challenges and successes of the American health care system through the experiences of inspiring survivors.

Charles Fazio wasn’t sure how he could survive another health crisis.

Charles Fazio

Charles Fazio

Just three years after his four-way heart bypass surgery, he developed end stage kidney failure. In the worsening economy, he had lost his job as a traffic signal technician in Norfolk, Virginia and had since become too sick to work. On top of his serious health problems, Charles’ financial worries were overwhelming.

“It was like after having all of these other things happen, now I have to deal with this, too,” said Charles. “It was a big shock.”

Charles’ disability benefits had not begun to come in and he had to sell off his possessions to afford his medical expenses. Eventually, he lost his home and found himself homeless for several days.

“One night I stayed in my mom’s nursing home. I went in to visit her and I pretended like I just fell asleep in the chair next to her,” Charles said.

In short, it had been a rough few years, to say the least.

Charles was treated at Sentara Norfolk General Hospital and received dialysis for a year and a half at the Virginia Commonwealth University (VCU) Medical Center. Completing the process for Medicare allowed him to afford his dialysis treatments and living expenses.

Then, one day in 2012, Charles’ regular doctor appointment morphed into an overnight kidney transplant. “I was scared to death,” Charles said. “I didn’t know what to expect. I had read up on everything thoroughly, but when the time comes, you really just have to face it.”

By 4 o’clock the next day, he had a transplant kidney.

Charles continued treatment and testing at the VCU Medical Center after his operation. His recovery went smoothly, but he still required numerous medications and immunosuppressants. Again, he couldn’t afford the copays.

That’s when doctors and social workers introduced Charles to the HealthWell Foundation, 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).. Charles was given a grant that enabled him to afford his medications.

“The grant I got from [HealthWell] took a lot of worry off of my back, a lot of tension,” Charles said.

With his financial stress reduced, Charles was better able to emotionally cope with his condition. “The help I got from Norfolk General, the VCU and [HealthWell] was the turning point for all of my frustrations, for feeling sorry for myself,” he said.

Now, Charles is doing quite well. At a recent annual check-up with his doctors at the VCU, his blood tests came back looking good. His transplant kidney is holding up well and his medication is stable. “You never know how you’re doing, even though you’re dieting and doing what your doctors are telling you,” he said. “In the back of your mind you’re asking, ‘How am I doing?’ and only a doctor can tell you.”

“But they said I’m doing well, and I feel good too.”

Charles is optimistic that his series of unfortunate events may now be in the past. He is recovering well and doing his best to stay healthy in his eating habits and his lifestyle. “When the weather’s nice, I try to take a walk once a week, and I hold on,” he said.

One step at a time, Charles. We’re all glad you’re here.

Categories: Access to Care, General

Be a HealthWell Hero for Patients This Holiday Season

“HealthWell literally saved my life.”

If we told you that the perfect holiday gift could help save a life, you probably wouldn’t believe us. Think again. You’ll make a sick person’s wish come true when you give the gift of health to patients in urgent need of financial assistance by donating to the HealthWell Foundation.

100% of contributions to HealthWell will go directly to help patients access critical, often life-saving services. Your generous gift — whether it’s $10, $25, $50 or more — could make all the difference for people who are struggling to get better. Just ask Sharon, from Detroit, MI.

Feeling drained and not knowing where to turn, Sharon wasn’t sure how she was going to afford the high cost of her lupus medications. Then she discovered HealthWell, which gave her the financial help she desperately needed, just in time. Now Sharon can continue working and her family no longer has to pinch pennies to help her pay for treatments:

“What people sometimes fail to realize is that people with chronic conditions are dependent on prescribed therapies,” Sharon said. “The absence of these treatments means that we can potentially miss out on an enhanced quality of life. That’s a terrible notion to fathom because who doesn’t want to live their best life possible?”

We couldn’t agree more. At HealthWell, we believe no patient – adult or child – should ever go without the treatments they need because they can’t afford it.

When you donate to us for the holidays, you’ll be a hero for patients like Brad from Myrtle Beach, NC.

“Thanks to grants from HealthWell, I can now get the medication I need to keep my disease at bay!”

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Financial assistance from HealthWell enables Brad to get the medication he needs to manage Rheumatoid Arthritis.

The generosity of supporters made it possible for him to afford the care that empowers him to control his severe/aggressive Rheumatoid Arthritis. Without a grant from HealthWell, he says he would live “a life of degrading joints, pain and disfigurement.”

Amy from Whitesburg, GA, was diagnosed in May 2010 with stage IV non-Hodgkin’s lymphoma, a blood cancer. Because supporters like you were there for her, she’s now living to celebrate her children’s birthdays and watch them grow up.would live “a life of degrading joints, pain and disfigurement.”

“After each of my eight chemo treatments, I received a treatment to boost my white blood cell count,” she said. “Your donation helped pay for those very expensive treatments, and they helped! I NEVER got sick during my treatment phase. I have now been in remission for 14 months!”

Amy, Brad, and Sharon are not alone. Our work is not done.

Folks all over the country – mothers, fathers, children, friends, neighbors and loved ones – are getting sick and watching the bills pile up, with no end in sight. The need is great and patients are counting on you to step up so we can continue to be a lifeline in these tough financial times.

Join us in saying Happy Holidays to patients and families by giving them some relief so they can start the New Year off right.

Categories: Cost-Savings

Personal Connections with Pharmacists Drive Medication Adherence Outcomes

With nearly half of all patients in the US not taking their medications as prescribed, medication non-adherence remains a dangerous and expensive problem that costs the health care system $329 billion annually (Express Scripts Drug Trend Report), meaning more hospitalizations and visits to the emergency room (ER).

Paul DeMiglio

Paul DeMiglio

So what’s the good news? Effective, comprehensive solutions are emerging to reverse this trend by involving the pharmacist to improve medication adherence rates through a personal connection with patients.

Recent stories underscore how pharmacists are uniquely positioned to engage patients in conversations that help them understand why treatments are prescribed and why meds should be taken as directed.

A report released on June 25 by the National Community Pharmacists Association (NCPA), for example, illustrates how interpersonal relationships between pharmacists and patients boost adherence. Authors of the report found that a patient’s sense of connectedness with one’s pharmacist or pharmacy staff was the survey’s “single strongest individual predictor of medication adherence.”

“Pharmacists can help patients and caregivers overcome barriers to effectively and consistently follow medication regimens,” NCPA CEO B. Douglas Hoey, RPh, MBA, said in a statement. “Indeed, independent community pharmacists in particular may be well-suited to boost patient adherence given their close connection with patients and their caregivers.”

According to the American Pharmacists Association (APhA), one effective method pharmacists can use to improve adherence is medication therapy management (MTM) services for patients taking more than one drug for multiple chronic medical conditions. In addition to therapy reviews, pharmacotherapy consults, anticoagulation management, immunizations, health and wellness programs and other clinical services, MTM involves the following elements:

  • Comprehensive medication review, including a personal medication report that lists all the medications the patient is taking.
  • Medication action plan.
  • Education and counseling or other resources to enhance understanding about using the medication and to improve adherence.
  • Coordination of care, including documenting MTM services, providing the documentation to other providers, and referring patients to other providers as needed.

Pharmacists can also leverage a variety of practical tips to help patients improve adherence that include:

  • Discussing the appropriateness of each medication and its impact on their multiple medical conditions.
  • Evaluating the effectiveness and safety of each medication.
  • Assessing whether some medications may be unnecessary and should be discontinued.
  • Discussing the need to change medications or doses if problems arise.

The implications of improved adherence will help lower the cost of treating chronic conditions, decrease hospitalizations, reduce ER visits and by extension lower the risk of treatment failures, serious adverse reactions and deaths too.

“Studies have repeatedly recorded the cost-saving effect of MTM,” said Kevin Schweers, Senior Vice President, Public Affairs, NCPA. “One Minnesota study found a 12:1 return-on-investment for MTM.  In North Carolina, Kerr Drug reports that MTM programs for seniors produced a 13:1 return. Improved adherence would likely help reduce hospitalizations as well. So many prescription drugs are intended to treat chronic conditions, such as heart disease, that can result in hospitalization. In addition, hospital re-admissions can result from the failure to stick to a prescribed medication regimen.”

Joel Zive, adjunct clinical faculty, University of Florida College of Pharmacy, underscored the need for patients to cultivate relationships with their pharmacists.

“While MTM services are quite important in helping adherence, getting to know your pharmacist’s name is helpful in establishing a relationship with your pharmacist,” he said. “Pharmacists are trained to pick up clinical clues from patients.  This is why if you are having unusual reactions medications, speaking to your pharmacist is an option.”

Although MTM services are an effective way to increase adherence, greater participation among patients and pharmacists is needed according to the APhA and the National Council on Patient Information and Education (NCPIE).

In addition to leveraging tips and strategies to boost adherence, pharmacists can also draw on a number of resources for patients, referring them to the NCPIE wallet card and to a brochure made available by NCPIE and the Agency for Healthcare Research and Quality (AHRQ), “Your Medicine: Be Smart. Be Safe.”

What else can pharmacists do to engage patients? How can stakeholders in health care, government, academia and the private sector collaborate to improve dialogue among pharmacists and patients around strategies that increase adherence?

Heroes Needed: Apply Within

We’re taking a departure today from our coverage of what works in American health care to ask for your help.

Patients want us to re-open our Breast Cancer Fund at HealthWell, but we can’t successfully do that until we identify several key companies or organizations to partner with us in this effort.

When HealthWell’s Breast Cancer Fund was open, thousands of Americans battling breast cancer found new hope to live healthier lives. Nearly 17,000 insured breast cancer patients received the financial assistance they needed so that the surging cost of treatments was not a barrier to accessing critical care.

As HealthWell prepares to re-launch its massive Breast Cancer Fund, we are expanding our call to action. We are seeking partners to help us make a real, positive difference in the lives of insured patients who often struggle to afford critical treatment including medications.

By becoming a strategic partner with the HealthWell Foundation, your organization will help thousands of Americans who face medical bills they can’t afford.  Beyond the incredible satisfaction of knowing that you played a role in persuading your organization to help us re-open this fund, you’ll gain a cause marketing partner that will support your efforts to build and shape your brand to new audiences.

When you work with us to empower patients, you will leverage a unique opportunity to win exclusivity, naming rights and more.

With one in eight women in the U.S. expected to develop breast cancer during her lifetime, the need for timely, life-sustaining care is outpacing our health system’s ability to assist patients. More and more Americans are in desperate need of immediate financial relief to afford deductibles, co-pays and premiums, yet many have few places, if any, to turn for assistance.

Women like Linda in Powell, Tenn., illustrate exactly why support for the Breast Cancer Fund at HealthWell is needed. When Linda realized just how expensive her breast cancer medication would be, she was scared. As a self-employed grandmother of two, she faced a $5,500 deductible for her insurance premium alone. Additional costs for mammograms, colonoscopy, endoscopy and lab work were all out-of-pocket and she wasn’t sure how she would make ends meet.

That is, until she discovered the Breast Cancer Fund at HealthWell, a lifeline that enabled her to afford the treatments she needed to remain cancer-free two years after her diagnosis.

“My patient advocate gave me a list of several foundations to contact which I did,” Linda said. “The first turned me down because they said we went $50 over our salary. The second turned me down because I had a deductible. Then I heard from HealthWell. We couldn’t believe we had found help. We just had to cry. I am so thankful. Every time I have my prescription filled it still amazes me. Not many good things have happened to us.”

The fund’s incredible track record of success in offering assistance to patients in need is exactly why we must reopen it now.

The HealthWell Foundation believes that no patient – adult or child – should go without health care because he or she cannot afford it. As demand for medical treatments increases while associated prices continue to spike, we want the Breast Cancer Fund at HealthWell to once again provide timely, critical copay and premium assistance and expanded services to breast cancer patients.

These services went far to ease the strain felt by patients covered under Medicare, Medicaid, private insurance and employer-sponsored plans with incomes up to 400% of the federal poverty level.

Strengthening the financial safety net for more patients begins with teamwork. Together we can be part of the solution, harnessing our resources to make access to quality medical treatment a reality for more Americans battling breast cancer. Please contact us if your company may be interested in partnering with us to re-open this vital fund.

The HealthWell Foundation sponsors this blog because we are innovators in finding solutions to overcome hurdles in the American health care system. The thousands of women at work right now trying to clear the hurdle of breast cancer deserve everything we have to give.  Join us.  We have so much yet to do.  And you could make a difference in so many lives.

Categories: Cost-Savings