Real World Health Care Blog

Tag Archives: lupus

“It’s Lupus”: The Words No Woman Wants to Hear

They’re in the prime of their lives: young women who are finishing college, getting married, starting careers and families. Then comes the devastating diagnosis: systemic lupus erythematosus (SLE), otherwise known as lupus.

Linda Barlow

Linda Barlow

One and a half million Americans are afflicted with lupus, but the disease occurs 10 times more in women than in men and typically strikes when women are between the ages of 15 and 44. Lupus is the leading cause of kidney disease, cardiovascular disease and stroke among young women. Women of color are two to three times more at risk for lupus than Caucasians and are more likely to have disease that is severe.

Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body; it is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack.

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A note from our sponsor:  If you or someone you know is living with lupus and struggling to afford the treatments, the HealthWell Foundation may be able to help.  Click here to visit HealthWell’s eligibility page.

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While many people may have heard of lupus, research shows that two-thirds of the public know little or nothing about the disease, and medical research has remained underfunded relative to its scope and devastation.

Lupus Awareness Month was established to provide people around the world the opportunity to unite and raise awareness of the disease. Several patient advocacy groups are recognizing May as Lupus Awareness Month with a variety of activities and outreach programs. We highlight two of them here.

To draw attention to the devastating effects of lupus in women in their twenties — the decade in which lupus is most often diagnosed — the Lupus Research Institute unveiled “Window on Lupus 2020,” a larger-than-life window display at New York City’s Rockefeller Plaza. Seen by about 250,000 people daily, the window display urges young women to talk with their healthcare professional if they have common symptoms of lupus such as persistent fatigue and fevers, swollen joints and/or skin rash.

“Twenty is the age when the future beckons with the brightest promise,” said Margaret Dowd, LRI President and CEO in a statement to the media. “But for many young women diagnosed with lupus, the future can hold the threat of serious consequences — the potential for a stroke, a heart attack, and kidney disease. We want people with lupus to know that there is hope in their future as we work to achieve our 2020 milestone to help prevent organ damage and progression.”

The Lupus Foundation of America is another patient advocacy group working to increase awareness of the disease. The Foundation launched a multi-media campaign this month called “KNOW LUPUS.” The campaign features a series of television public service announcements (PSAs), which include a collection of testimonials and statements from people living with lupus, along with celebrity advocates including Whoopi Goldberg, Tim Gunn and Susan Lucci.

The PSAs encourage people to play an online game that engages them to KNOW LUPUS and make a donation to lupus research.

“The goal of the KNOW LUPUS campaign is to bring greater awareness of lupus and raise funds for lupus research by engaging support from corporations, media, celebrities and community partners,” said Sandra C. Raymond, President and CEO, Lupus Foundation of America. “Everyone needs to KNOW LUPUS to create a future with NO LUPUS.”

Are you or is someone you know suffering from lupus? What are you doing to help spread the word about this disease, especially among young women? Let us know in the comments.

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.

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

Real World Health Care is on its summer break. During this time, we will be revisiting some of our Patients of the Month. Please enjoy these inspiring stories from the patients we serve.

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.

Sharon Harris

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.”

SharronHarris2

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.

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.

SharonHarris1

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.”

SharronHarris2

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

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