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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

New Drug Delivery Options that Help the Medicine Go Down

David Sheon

David Sheon

The water cooler talk for us at RWHC is frequently about improving treatment adherence (a patient’s ability and willingness to take his or her medicine consistently, as directed).  OK, so we don’t have the most exciting water cooler discussions.  But this happens to be important – for all of us because when patients stay on treatment, they get better faster.  This is almost universally true, regardless of the therapeutic category.

In some cases, improving adherence not only saves the life of the patient, but it can benefit an entire community.  In HIV, for example, taking antiretrovirals not only helps the patient to manage his or her viral load (the amount of HIV circulating in the blood), but it also lowers that patient’s ability to transmit the virus to someone else.

Sometimes, adherence can be improved by using a different delivery system.  This is the first post in a series on how drug delivery helps adherence.

Remember the first time you took a breath strip that dissolved on your tongue? The technology was invented in the 1970s, but only since July 2012 have pharmaceutical companies been able to win marketing approval to put a drug on the strip.  Two products have been cleared by the FDA.

Zuplenz (ondansetron) oral soluble film is an anti-nausea and vomiting product used by cancer patients who experience nausea and vomiting as a result of receiving chemotherapy and/or radiation as well as for the prevention of postoperative nausea and vomiting.

“We know from market research that patients who are nauseated don’t necessarily like swallowing pills or using suppositories and that sometimes taking pills with water contributes to their nausea,” said John V. Aiken, M. Ed., Vice President, Corporate Operations, Marketing, and Training, Praelia Pharmaceuticals, Inc.  “Since launching the product in December 2012, a number of doctors are telling us that their patients prefer the dissolving strip.”

The second drug now available on an oral dissolving strip is Suboxone (Buprenorphine and Naloxone), from Reckitt Benckiser Pharmaceuticals Inc.  For more information on this product, click here.

If the dosing is standardized and absorption is as good as more typical drug delivery methods, we see only an upside in terms of patient adherence to oral dissolving strips.  Please tell us what you think.  Also, if you know of a new drug delivery option that you’d like to see us cover, let us know!

National Patient Safety Program Cuts Bloodstream Infections to Save Lives and Money

Central-line catheters are lifesavers. They’re used in hospitals to deliver therapy where needed and when needed for patients with a wide range of conditions.  Unfortunately, central line-associated bloodstream infections (CLABSIs) result in thousands of deaths each year and billions of dollars in added costs to the U.S. health care system, according to the CDC.

But there’s one collaborative program that has cut CLABSIs in intensive care units by 40 percent, preventing more than 2,000 infections, saving more than 500 lives and avoiding more than $34 million in health care costs. The program, funded by the Agency for Healthcare Research and Quality (AHRQ), used the Comprehensive Unit-based Safety Program (CUSP) to achieve these landmark results.

CLABSIs occur when germs enter the bloodstream through the central line (also known as a central venous catheter), which is placed in a large vein in a patient’s neck, chest or groin to give medication or fluids or to collect blood for medical tests. Such lines are commonly used in intensive care units and can remain in place for weeks or months.

Thanks in part to CUSP, progress is being made to protect people from these infections. In fact, nearly 60 percent fewer bloodstream infections occurred in hospital ICU patients with central lines in 2009 than in 2001. This decrease in infections saved up to 27,000 lives and $1.1 billion in excess medical costs. More recently, CLABSIs dropped 41 percent from 2008 to 2011, up from a 32 percent reduction in 2010.

CUSP Programs, like the one used in the AHRQ project, are being used by a number of state health departments to help prevent CLABSIs. CUSP combines clinical best practices with an understanding of the science of safety, improved safety culture and an increased focus on teamwork. It helps clinicians understand how to identify safety problems and gives them the tools to tackle those problems.

“In the CLABSI project, we learned that the principles of CUSP worked to make care safer, and that clinical teams could sustain those improvements over time,” said Jeff Brady, MD, MPH, Associate Director, Center for Quality Improvement and Patient Safety. “The CUSP toolkit, which is a free resource on AHRQ’s web site, is designed to help clinical teams improve any safety problem, not just CLABSIs or infections.”

Indeed, Dr. Brady notes that new projects are already underway to apply CUSP principles to other safety problems like perinatal care and other settings of care, like ambulatory surgery. In addition, AHRQ is developing a CUSP toolkit module to address patient and family engagement – a resource slated for introduction in the late spring.

The bottom line: CLABSIs are preventable and we have the replicable tools we need to protect more patients.

How are health care providers in your area preventing CLABSIs? Are there steps patients can take? If so, what are they?