Real World Health Care Blog

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UV Safety Month: Shedding Light on Melanoma Treatment and Prevention

In 2014, an approximate 77,000 Americans will be diagnosed with melanoma, culminating in nearly 10,000 deaths. Every eight minutes, an American is diagnosed with melanoma, and every hour, an American dies from it. Despite accounting for only four percent of all skin cancer cases, melanoma results in 80 percent of all skin cancer-related deaths. In observance of UV Safety Month, Real World Health Care is examining what’s working and what’s new in the prevention and treatment of melanoma.

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Nathan Sheon

If detected early, melanoma is easily treated with surgery. If a tumor in the epidermis – the upper-most layer of skin – is removed before it deepens into the skin or spreads to other parts of the body, the likelihood of completely curing melanoma is high. When melanoma spreads, other treatment options include chemo- and radiation therapy.

Once melanoma has progressed to its later stages, however, treatment of the disease becomes much more difficult. For these patients, treatment options usually focus on extending life expectancy and improving quality of life.

Within the last few years, developments in melanoma research have provided promising leads on how to increase a patient’s lifespan beyond the capabilities of existing treatments. Certain activation immunotherapies – drugs that activate the immune system’s ability to fight disease – are showing potential in their ability to combat the spread of melanoma by killing tumors. Though these treatments do not work in all melanoma patients, in some cases they have been associated with unprecedented increases in lifespan.

“All of these trials involve late stage cancer patients. Suddenly we’re seeing those same patients getting two years or more survival time,” said Ashani Weeraratna of the Wistar Institute, the nation’s first independent institution devoted to medical research and training. “Enhancing the immune system such that it can effectively target and destroy your tumor has been a goal for many years. That’s [the field’s] big advance.”

Melanoma is almost always curable when detected and treated early on. Monthly self-examinations and yearly visits to the dermatologist are highly advised, even for those not predisposed to skin cancers. More information on how to perform a self-examination can be found online in guides from the Skin Cancer Foundation and the Melanoma Research Foundation.

Among other important measures like self-examinations and avoiding tanning booths, the American Academy of Dermatology (AAD) advises that wearing sunscreen when spending time outdoors is vital, especially during peak daylight hours between 10 AM to 2 PM. The AAD suggests using sunscreen with a sun protection factor (SPF) of 30 or above. With a range of sunscreen products on the market, choosing the right one can be difficult. Different products are more effective for different people depending on skin type. Visit the Skin Cancer Foundation’s guide for more information on choosing the right sunscreen product for you. For more information and tips on preventing and detecting melanoma, visit the AAD’s online guide.

How do you stay safe in the sun? Let us know in the comments section.

*Jamie Elizabeth Rosen, editor of Real World Health Care, contributed to this piece.

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

August Health Awareness Days Provide Opportunities to Take Action

As young people across the country go back to school, patient advocates and government stakeholders are leveraging awareness days to help communities learn about health issues impacting children, prevention strategies and efforts to improve care. Here are some examples:

Children’s Eye Health and Safety Month
Each August organizations including the Envision Foundation underscore the need for screenings and examinations to promote early detection, intervention and prevention of vision problems in children.

Paul DeMiglio

Paul DeMiglio

Vision disorders in children cost Americans more than $5.7 billion in direct and indirect expenses each year, while the overall cost of vision problems nationwide soars to an estimated $139 billion (includes long-term care, productivity loss and medical bills), according to Prevent Blindness America. Treating eye disorders and vision loss early in life helps protect children from developing chronic, lifelong conditions that become more expensive to treat because of long-term, indirect costs that increase as populations age.

“The beginning of a new school year is an exciting time in a child’s life,” Hugh R. Parry, President and CEO of Prevent Blindness America, said in a statement.  “By working together with parents and educators, we hope to give all our kids a bright and healthy start!”

National Immunization Awareness Month
According to the Centers for Disease Control and Prevention (CDC), the National Public Health Information Coalition (NPHIC) highlights the need to improve national immunization coverage levels throughout August. To communicate the importance of immunizations now and throughout the year, NPHIC also developed a toolkit tailored to various populations including babies and pregnant women, pre-teens and teens, young adults, and adults. The toolkit seeks to:

  • Encourage parents of young children to get recommended immunizations by age 2.
  • Help parents ensure older children, preteens and teens have received all recommended vaccines by the time they return to school.
  • Remind college students to catch up on immunizations before they move into dormitories.
  • Educate adults, including health care workers, about vaccines and boosters they may need.
  • Urge pregnant women to get vaccinated to protect newborns from diseases like whooping cough.
  • Raise awareness that the next flu season is only a few months away.

The CDC also makes a wide array of resources available for those who want to learn more about the importance of immunizations or spread the word.

Neurosurgery Outreach Awareness Month
The American Association of Neurological Surgeons (AANS) is among the organizations that underscores why the beginning of the school year is a great time to educate communities about strategies to prevent sports-related head and neck injuries like concussions. AANS provides tools to help others more effectively identify symptoms of potentially serious head/neck injuries and take preventive steps to ensure safety, also offering the following tips:

  • Buy and use helmets or protective headgear approved by the American Society for Testing Materials for sports 100 percent of the time.
  • Remain abreast of the latest guidelines and rules governing sports with a high prevalence of head injuries including cheerleading, volleyball, and soccer.

“Concussion awareness, understanding the symptoms of a potential concussion or other traumatic brain injury, is critically important in all sports,” AANS Public Relations Committee chair Kevin Lillehei, MD, FAANS, said in a statement. “Educating the public is one of the best weapons we have when it comes to combating these types of injuries. That is why it’s so important to raise awareness in the community and explain just what some of the effects are that these injuries have.”

Psoriasis Awareness Month
Sponsored by The National Psoriasis Foundation each year, Psoriasis Awareness Month is dedicated to “raise awareness, encourage research and advocate for better care for people with psoriasis.”

The most common autoimmune disease in the US affecting 7.5 million Americans, Psoriasis occurs when the immune system sends out faulty signals that speed up the growth of skin cells and produce red, scaly patches that itch and bleed. About 20,000 children under 10 are also diagnosed, often experiencing symptoms that include pitting and discoloration of the nails, severe scalp scaling, diaper dermatitis or plaques.

As part of Psoriasis Awareness Month, NPF is creating a community of “Pscientists” to “answer real‑world questions about psoriasis and psoriatic arthritis.”

Spinal Muscular Atrophy Awareness Month
Although it’s considered a “rare disorder” with approximately 1 in 6000 babies born affected by it, Spinal Muscular Atrophy (SMA) is a motor neuron disease that causes voluntary muscles to weaken and in some cases can lead to death, according to the National Institutes of Health’s (NIH) National Institute of Neurological Disorders and Stroke (NINDS). Types I, II and III belong to a group of hereditary diseases that weaken the voluntary muscles in the arms and legs of infants and children, contributing to breathing issues, difficulty eating and drinking, impaired mobility and orthopedic complications.

Families of SMA, which has coordinated activities around SMA Awareness Month since 1996, and the Muscular Dystrophy Association (MDA), are two national organizations that support those living with SMA. Click here to learn about events this month, community networks and research projects for treatment and therapies.

What activities are taking place in your community to support one or more of these awareness days? What could the institutions in your neighborhood, workplace or at your school be doing year-round to more effectively engage populations about critical health issues?

Categories: Access to Care