Real World Health Care Blog

Access to Care

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.”

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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.

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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.

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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.

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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.

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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.

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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!”

 

Many Insured Americans Not Getting the Healthcare They Need

Last month, FamiliesUSA.org issued a sobering report about the disconnect between having medical insurance and receiving the healthcare one needs. The report concluded that for many Americans with non-group coverage (as opposed to having insurance from an employer or a public coverage program), deductibles and other out-of-pocket costs are prohibitively high and are associated with many of these insured consumers forgoing needed healthcare. According to the report, more than one in four adults who bought insurance for themselves or their families last year had to skip medical care because they couldn’t afford it.

Linda Barlow

Linda Barlow

“The Affordable Care Act has increased access to health insurance and financial assistance for millions of Americans,” wrote the report’s authors. “But even with the new assistance that helps consumers pay their premiums and out-of-pocket healthcare costs, one-quarter of consumers who buy insurance on their own still have problems being able to afford needed care.”

According to the report, adults with non-group coverage went without:

  • Tests, treatments or follow up care (15% of adults)
  • Prescription drugs (14%)
  • Medical care (12%)
  • General doctor care (12%)
  • Specialist care (11%)

High deductibles, copayments and coinsurance can leave some people in the position of having to make very tough decisions. Pay for needed medications or the electric bill? Pay for a doctor-recommended test or make a car payment? Pay for treatments and follow up care or pay the monthly mortgage?

These are decisions no one should have to make. No one should have to decide between cancer treatments and putting food on the table. No one should have to sell their car to pay for their child’s asthma medication. No one should go into bankruptcy just because they’ve been diagnosed with a life-changing illness.

If you or someone you know is facing decisions like these, know that help is available. Patient advocacy organizations, drug manufacturers, and charitable patient assistance programs may be able to provide financial assistance.

Do you know of an organization that helps provide a financial lifeline to Americans with inadequate insurance? Let us know about it in the comments section.

 

 

Awareness and Assistance Are Crucial to Fighting Hepatitis C

May is Hepatitis Awareness Month, a time when the healthcare and patient advocacy communities rally support for the millions of Americans afflicted with the disease, including an estimated 3.2 million suffering from chronic Hepatitis C (also known as HCV).

HepatitisAwarenessMonthOver time, chronic Hepatitis C can cause serious health problems, including liver damage, cirrhosis, liver cancer, and even death. In fact, Hepatitis C is a leading cause of liver cancer and is the number one cause of liver transplants.

While millions live with Hepatitis C, many don’t even know they are infected. This “hidden epidemic” can strike just about anyone, but those born from 1945 to 1965 are five times more likely to have the disease than those in other age groups. That’s why the CDC has issued a recommendation for all Americans born during that time to get a blood test for the disease.

In addition to the baby boomer generation, others may be at high risk for HCV infection, including those who:

  • Use injection drugs
  • Used unsterile equipment for tattoos or body piercings
  • Came in contact with infected blood or needles
  • Received a blood transfusion or organ transplant before July 1992
  • Received a blood product for clotting problems made before 1987
  • Needed blood filtered by a machine (hemodialysis) for a long period of time due to kidney failure
  • Were born to a mother with HCV
  • Had unprotected sex with multiple partners
  • Have or had a sexually transmitted disease
  • Have HIV

For people at risk, knowing they have Hepatitis C can help them make important decisions about their healthcare. Successful treatments can eliminate the virus from the body and prevent liver damage, cirrhosis, and even liver cancer. But sometimes, the cost of those treatments are out of reach, even for those with medical insurance.

Financial Relief Available

The HealthWell Foundation’s new Hepatitis C Fund is bringing financial relief to underinsured people living with the disease. Through the fund, HealthWell will provide copayment assistance up to $15,000 for HCV treatment to eligible patients who are insured and have annual household incomes up to 500 percent of the federal poverty level. To determine eligibility and apply for assistance, or learn how to support this program, visit http://bit.ly/HepC2015.

“The new generation of hepatitis C treatments has brought excitement to patients who have been hoping for a breakthrough,” said Krista Zodet, HealthWell Foundation President. “Through the generosity of our donors, our Hepatitis C Fund is able to help more people receive these treatments while minimizing the worry over financial stress.”

Because many HCV infections are identified only after the patient becomes symptomatic, community health centers are extremely important for getting patients into care. BOOM!Health is a community service organization located in the Bronx, New York, the epicenter of the Hepatitis C epidemic in New York City. It offers a variety of services to those living with HCV infections, including a fully staffed health center, pharmacy services, case management, nutrition education, counseling, pantry services, syringe exchange, behavioral care, and more.

“People living with HCV continue to face serious challenges, such as stigma and lack of access to treatment,” said Robert Cordero, President and Chief Program Officer, BOOM!Health, a community health center based in the Bronx that supports individuals on their journey towards health, wellness and self-sufficiency. “Non-profits that provide funding assistance like HealthWell fill a gap that we’ve watched grow.”

“Nearly 3.2 million people in the United States and about 150 million people worldwide are chronically infected with HCV,” said Tom Nealon, Esq., National Board Chair of the American Liver Foundation, a national patient advocacy organization that promotes education, support and research for the prevention, treatment and cure of liver disease. “The HealthWell Foundation and other independent copay charities play a vital role in seeing that those who are insured but can’t afford their medication copay are able to access and stay on treatment.”

If you or someone you know is living with Hepatitis C, emotional, physical and financial support are critical. What organizations and programs are you turning to for help? Let us know in the comments.

Retraining Retired Docs to Alleviate Physician Shortage

If the industry estimates are correct, the United States could be facing a shortage of primary care physicians to the tune of 130,000 needed doctors by 2025. But a program developed by a group of physicians, along with University of California San Diego School of Medicine faculty, seeks to address that shortage. 

Linda Barlow

Linda Barlow

The Physician Retraining and Reentry program (PRR) is an online program designed to give experienced, medically licensed physicians and specialists — retired or otherwise — the opportunity to practice adult outpatient primary care in understaffed clinics across the country. 

The program has also given new hope to disabled surgeons who are no longer able to practice surgery, but who are far from voluntary retirement. While these surgeons are unable to perform surgery due to dexterity issues, they are fully capable and eager to treat patients in a primary care setting. 

“With approximately 10,000 baby boomers turning 65 each day and becoming Medicare eligible, and an additional 30 million people gaining access to healthcare due to the Affordable Care Act, PRR is doing its part to help make a positive impact on the nation’s healthcare system,” says Dr. Leonard Glass, founder and president, PRR, and a former UC San Diego School of Medicine professor. 

To participate in the program, physicians must take 15 online courses, covering everything from cardiology and dermatology, to medical records. Doctors must pass each course’s test before moving on to the next course. After completing all 15 courses, doctors must pass a final online exam. 

“Physicians completing the program will have mastered the medical knowledge and diagnostic skills necessary to serve as outstanding general practitioners,” adds Dr. David Bazzo, chief medical officer, PRR.  

After a doctor completes the program, the PRR team provides job placement assistance in health centers in desperate need of expertly trained staff. This includes community clinics, collegiate clinics, industrial clinics, emerging chain store clinics, hospital group clinics, retail clinics, military clinics and urgent care centers. 

PRR has received inquiries about its program from 1,000+ physicians in nearly all 50 states, including U.S. military physicians who have served internationally and are hoping to secure jobs in primary care when they return home. More than 70 students are currently enrolled in the program and just over a dozen are either employed or pursuing employment with the help of PRR staff. 

One of those graduates is Dr. Michael LaRocque, who currently is working as an M.D. with a federally qualified health center (FQHC) in Vista, California. 

“After running a private urology practice for nearly three decades, I entered retirement for several years before reading a news article about Physician Retraining & Reentry,” says Dr. LaRocque. “I always thought primary care was an interesting field, and I was ready to make more productive use of my free time. By completing the PRR program, I was able to land a great job that averages about 30 hours per week at a federally qualified health center near my home. It’s wonderful to be seeing patients again and to be making an income without the responsibility of running an entire practice.” 

PRR is a unique program designed to address the country’s doctor shortage program. Are you aware of any other programs with the same goals? Let us know in the comments section.

 

Categories: Access to Care, General

The Future of Healthcare Transportation? May Just Be Subscription-Based Ride Share

Meeting the health-care demands of the elderly community is already a challenging job, but patients who miss appointments add to that challenge. Unlike 20 years ago, today there are more independent seniors who live remotely from immediate family. At the same time, more surgical procedures are now done with patients going home the same day. Relying on friends and family members to get to and from the health care facility just doesn’t work anymore and seniors are being left to fend for their own care.

Jeffrey Ericson, CEO and Founder, RubyRide

Jeffrey Ericson, CEO and Founder, RubyRide

As physicians and caregivers, we need to change our mindset on how care is going to be provided and look at the future of healthcare. There is a recognized need for high quality extended post-surgical care beyond the hospital recovery unit. Enter a PostOp Concierge service.

To alleviate the stress of having to ask family and friends for help, the only subscription-based car and driver service in the United States, called RubyRide, has been launched in partnership with board certified anesthesiologist, Dr. Karl Frindrich, MD. The service, which is being piloted in Phoenix, Arizona, hopes to partner with senior centers and healthcare facilities around the country to extend the service area.

So what is PostOp Concierge and what benefit would a service such as this provide to the senior community?

PostOp Concierge supports all patient transportation and service needs for pre-operation as well as post-operation. In addition, all drivers are extensively background checked to ensure a safe environment from a ride, recovery and healing process standpoint. Staff has to be CPR, ADA, and First Aid trained.

As an extension, there is a Home Safe Program™ encouraging a safer home environment by making sure all passage ways, bedrooms, bathrooms and kitchen are free of obstruction and well lit. Trained providers can help interpret post-operative instructions to make them clearer, decreasing non-vital phone calls to the surgeon’s office. When patients do need help with medical problems such as nausea, vomiting or excessive pain, the patient quickly reaches the right person in the doctor’s office to get the help they need. This combination of services is intended to create a safer environment for the patient, as well as reassuring them that they are progressing as expected for the procedure.

Some patients resort to asking family or friends to deliver them to the surgical procedure as well as back home. According to Dr. Frindrich, the minimum time needed to take a patient to and from a procedure is approximately four to six hours, including round-trip drive time, pre-operative procedures, the surgical procedure, and recovery. With today’s busier lives, the patient needs a driver care service he or she can rely on. Patients not only have someone to ride along with them to and from a procedure for emotional support, but physicians do not have to worry about how they are going to transfer the post-op patient home.

The future of the senior medical industry is headed in the ‘concierge’ direction. Communities need to embrace new models of care that are both safe and affordable options providing that continued piece of mind. After all, we are all going to be seniors one day and we only hope that the level of care and attention makes sense.

Jeff Ericson is the CEO and Founder of RubyRide, a membership-based transportation provider that specializes in scheduled, local, regular trips on a recurring revenue model.

 

 

 

30 Years of Health Disparities in Focus during National Minority Health Month

April is National Minority Health Month, a time to raise awareness about the health disparities that continue to affect minority populations. The observance traces its roots to a landmark 1985 report from the U.S. Department of Health and Human Services (HHS) that documented the existence of health disparities among racial and ethnic minorities in the U.S. The report called such disparities “an affront to both our ideals and to the ongoing genius of American medicine.”

Heckler_Report_logo_ribbon_site_highFast forward 30 years, and the HHS’s Office of Minority Health (established in 1986 and re-authorized in 2010 by the Affordable Care Act) continues its work to improve the health of racial and ethnic minority populations through the development of health policies and programs that will eliminate health disparities.

What sort of health disparities exist in the U.S.? According to the Office of Minority Health:

  • The death rate for African Americans is generally higher than for Whites for heart diseases, stroke, cancer, asthma, influenza and pneumonia, diabetes, HIV/AIDS and homicide. African American children are three times more likely to be admitted to the hospital for asthma than non-Hispanic White children, and African American adults are 70 percent more likely than non-Hispanic white adults to have been diagnosed with diabetes. In addition, fewer African Americans have health insurance than non-Hispanic Whites and are more likely to rely on Medicaid.
  • American Indians and Alaska Natives have an infant death rate 60 percent higher than the rate for Whites. They are also twice as likely to have diabetes, and have a disproportionately high death rate from unintentional injuries and suicides. American Indians and Alaska Natives also frequently contend with issues that prevent them from receiving quality medical care, such as cultural barriers, geographic isolation, inadequate sewage disposal and low income.
  • Tuberculosis is 24 times more common among Asians than for the non-Hispanic White population. Asian Americans also contend with numerous factors that may threaten their health: infrequent medical visits due to fear of deportation, language/cultural barriers, and the lack of health insurance.
  • Hispanics have higher rates of obesity than non-Hispanic Whites. Puerto Ricans have a low birth weight rate that is twice that of non-Hispanic Whites. They also suffer disproportionately from asthma, HIV/AIDS and infant mortality. Mexican-Americans suffer disproportionately from diabetes. Hispanic health is often shaped by factors such as language/cultural barriers, lack of access to preventive care, and the lack of health insurance.
  • Native Hawaiians and Pacific Islanders have higher rates of smoking, alcohol consumption and obesity compared with other ethnic groups. This group also has little access to cancer prevention and control programs.

To address these disparities, HHS in 2011 issued the HHS Action Plan to Reduce Racial and Ethnic Health Disparities. In the Action Plan, HHS points to the related benefits of the Affordable Care Act (ACA): “The Affordable Care Act not only includes provisions related broadly to health insurance coverage, health insurance reform, and access to care, but also provisions related to disparities reduction, data collection and reporting, quality improvement, and prevention. The [ACA] will also reduce health disparities by investing in prevention and wellness, and giving individuals and families more control over their own care.”

The Centers for Disease Control and Prevention are also on the front lines of advancing health equity with several programs in place that support the HHS Action Plan:

  • In collaboration with the Centers for Medicare & Medicaid Services (CMS), CDC is leading the HHS-wide “Million Hearts Initiative” to enhance community and clinical interventions to prevent cardiovascular disease (CVD) and stroke among all Americans, including minority populations at greater risk for CVD.
  • In the U.S., rates of childhood obesity are high overall, but for minority and low-income communities, they are even higher. The Childhood Obesity Research Demonstration (CORD) Project seeks to determine whether coordinated approaches in the community that support healthy behaviors can improve underserved children’s health.
  • The CDC Undergraduate Public Health Scholars (CUPS) program supports internship programs that expose undergraduate students interested in minority health to the field of public health research and practice by providing hands-on, project-oriented assignments.
  • The National Influenza Vaccination Disparities Partnership, supported by the CDC, is comprised of multi-sector partners working to promote vaccination among underserved populations including African Americans, Hispanics, and American Indians/Alaska Natives.
  • CDC also continues to partner with states and other grantees to work on reducing tobacco use among racial and ethnic minorities.

Disparities also exist at the health care provider level. According to the NAACP’s Opportunity & Diversity Report Card: Healthcare Industry, released earlier this month, top management positions in health care remain firmly dominated by white employees, despite the establishment of diversity and inclusion programs and a significant increase in minority college graduates entering the workforce over the past 20 years.

“With the health care industry being one of the fastest growing sectors in the country, it is important for us to highlight opportunities in this industry and where we can strengthen people of color’s full participation,” said Roslyn M. Brock, chairman, NAACP Board of Directors, in a press statement.

Here at Real World Health Care, we believe that every American, regardless of race or ethnicity, should have access to affordable care and patient-centered prevention programs. We salute the efforts of governmental organizations, NGOs, health care providers and other groups working to eliminate health disparities.

Are you aware of any individual or group efforts to reduce health disparities? Let’s all learn from what is working. Please share your examples in the comments section.

 

Collaboration among Patient Advocacy Groups, Scientists & Clinicians Moves Porphyria Research Ahead

Editors Note: Recognizing National Porphyria Awareness Week this week, we invited Desiree Lyon, the Executive Director of the American Porphyria Foundation (APF), to share how her organization is supporting research that improves treatment and ultimately seeks a cure for this rare disease.  Patient advocacy groups addressing rare diseases play a particularly important role in fostering research into their disease states.  Because rare diseases affect small numbers of patients, finding enough people for research studies can be difficult. The number of experts studying the illness is small. The largest sources of medical research support government and industry put far more money into studying widespread diseases because of the potential to help so many patients live longer and enjoy a higher quality of life.  APF is an example of a rare disease community that is working in many ways to overcome these challenges and provide hope for patients and families.

Desiree Lyon, American Porphyria Foundation

Desiree Lyon, American Porphyria Foundation

The American Porphyria Foundation (APF) has been instrumental in facilitating porphyria research for over thirty years. Porphyria is a group of at least eight disorders in which normal body chemicals accumulate abnormally, with symptoms that arise mostly from effects on either the nervous system or the skin. Porphyria affect fewer than 200,000 people in the United States, making it a rare disease.

As with other rare diseases, only a few doctors and medical centers have expertise on porphyria, making collaboration among patients, clinicians, researchers, patient advocacy groups and caregivers even more important than with other diseases.

The collaborative relationship with our Scientific Advisory Board of porphyria experts is vital to the success of our research projects. This relationship became even more productive when the APF and the experts formed the Porphyria Research Consortium, which was funded by the NIH Rare Disease Clinical Network.

Together, the APF and our Porphyria Research Consortium formed the National Porphyria Research Registry. The APF prepares patients who may be considering participation in a clinical trial by educating them on the value and process for trials, introducing them to the investigators, and encouraging them to join the Registry. We reduce patients’ fears and provide reassurance about the Registry, clinical trials, the expertise of the researchers and the merit of the research by publishing articles on the APF website, in newsletters, internet E-news and social media, including Facebook, Twitter, and blogs.

Another unique and successful collaboration to locate and register research participants occurs at APF patient education meetings held around the country. Porphyria experts volunteer for these gatherings to make presentations, answer questions, register patients for their research and often collect DNA samples.

The Porphyria Research Consortium and the APF are collaborating on eight clinical trials, including one on a powerful treatment for the acute porphyrias cleared by the FDA thirty years ago as the first Orphan Drug. Since the APF is aware of most people who are using this treatment, we have been instrumental in locating participants for the clinical trials and advancing the research.

Also important to our research efforts are the young physicians, who participate in the Protect the Future (PTF) program, an APF supported mentor project to train the next generation of porphyria experts and scientists so they are well versed in both the clinical and basic science of the porphyrias. PTF physicians serve as clinicians at APF-funded “satellite clinics” where patients are given the opportunity of visiting a physician with porphyria expertise, while the PTF physicians gain a new pool of research patients.

The HealthWell Foundation is proud to partner with APF to promote the availability of copay assistance for patients receiving treatment for porphyrias.  If you or someone you know could benefit from financial assistance related to porphyrias treatment, please contact the HealthWell Foundation to learn more and determine eligibility.

Foundations like the APF are critical to enhancing awareness of rare diseases. Are you involved with a rare disease Foundation like the APF? If yes, let us know what you’re doing to raise awareness in your disease community by leaving a comment below.

 

Life-Saving Information: Only a Smart Phone Away

For people suffering with chronic medical conditions such as diabetes, allergies, or epilepsy, wearing jewelry or carrying wallet cards containing emergency medical information (EMI) can be life-saving. However, some people feel uncomfortable with the stigma attached to EMI, or don’t use such accessories due to cost or inconvenience. Children, especially, are not likely to carry EMI identification because they are often with caregivers who know their medical history and needs.

Linda Barlow

Linda Barlow

Despite these barriers, EMI is vital in emergencies. It can help people identify what is wrong, allow providers to give appropriate medical care, provide the necessary contact information for the patient’s physician and family, and improve time to treatment. But if EMI isn’t available or accessible, it won’t provide these benefits.

Endocrinologists at the Children’s Hospital at Montefiore have studied this problem and a potential solution: a smartphone app that can be accessed without knowing the person’s password. Since most people — including kids and teens — carry their mobile phones with them all the time, a smartphone app can circumvent the problem of someone forgetting to carry their traditional EMI. And since it is simply part of their phone, it avoids the discomfort some people have about wearing EMI jewelry.

A report on this new way of sharing EMI, published in the journal Clinical Pediatrics, reviews the current choices for EMI, as well as its usage and barriers, and introduces a new EMI option for Apple mobile devices.

“A cell phone maintains anonymity of a person’s medical condition unless an emergency requires accessing the EMI,” suggest the report’s authors, noting that medical alert jewelry is more obvious. “Another advantage of cell phone-based EMI is the lack of additional cost for a MedicAlert device and membership or similar service.”

One of the traditional barriers to using smartphone apps for EMI is the need to enter the user’s password to access the app, which isn’t always possible during an emergency. However, Apple’s new iOS 8 software for iPhones and iPads has an application called “Health” that allows a user to enter information that can be accessed from the home screen, even on protected phones.

By opening the Health app and selecting the Medical ID option, patients can provide their medical conditions, medications, allergies, emergency contacts, blood type, organ donor status, and DNR requests. The information can be accessed on a locked home screen by tapping the emergency button and selecting the Medical ID option. On screens without a password lock, the user can access the information by opening the Health application.

“Cell phone-based EMI should be embraced by patients, health care providers, and cell phone programmers,” the authors write. “It remains to be determined whether patients will use technology-based EMI once they are aware of the option. Medical providers, including first responders, should be aware of this technology to educate their patients and to access the information in emergency settings.”

“We are embarking on an education campaign to spread awareness about traditional and modern EMI options,” says Kristina Derrick, MD, MSc, Pediatric Endocrine Fellow, Children’s Hospital at Montefiore. “To start, we are creating information sheets that have instructions on obtaining EMI for the smart phone and traditional forms like jewelry and wallet cards. We will be distributing this information to patients, families and pediatricians as well as to emergency department staff and first responders.”

“Some patients may not be convinced of the need to have emergency medical information accessible to others,” Dr. Derrick cautions. “But even a patient or parent who knows everything about the medical condition and contact numbers may not be able to recall or relay this information during an emergency incident.”

Have you or a loved one used a smartphone based EMI to share important medical information with providers? Or is this a technology you would consider using? Let us know in the comments section.