Real World Health Care Blog

Tag Archives: children

Don’t Judge a Book By Its Cover

Editor’s Note: February is American Heart Month, sponsored by the American Heart Association. While some may think heart problems are primarily a concern of the middle-aged and older, one out of every 100 kids has a heart condition. Simon’s Fund was established in 2005 in memory of Simon, son of Phyllis and Darren Sudman. The organization provides free heart screenings to children in the Greater Philadelphia area. It also sponsors medical research projects, hosts awareness events, works with major medical institutions and promotes legislation. We’ve invited Simon’s dad to share his thoughts in this week’s blog post.

Last year, many parents in the Greater Philadelphia area learned what I learned ten years ago – sudden cardiac arrest (SCA) isn’t just an adult thing. It takes the lives of thousands of children every year.

Simon Sudman

Simon Sudman

Two students, an eighth grader from Mount Laurel, N.J., and a first grader from Philadelphia, collapsed and died from cardiac arrest.

In 2005, my son, Simon died suddenly. He was a baby so most people told me it was SIDS. Our pediatrician, however, was a bit wiser. She said, “Get your hearts checked because babies don’t just die.” Following her advice, we got tested. My wife, Phyllis, was diagnosed with a heart condition called Long QT Syndrome. It’s an arrhythmia that is linked to 15 percent of all SIDS deaths.

My heart breaks for these two families. The obvious reason is that there is a gaping void in their life now. It may narrow over time, but it will always be there. There is nothing more painful or unjust than losing a child. We all know that life is unfair, but it’s not supposed to be this unfair.

The less obvious reason is that I’ve dedicated the last decade to raising awareness about sudden cardiac arrest in children so that other parents wouldn’t have to take this path. I wanted them to be smarter so they could do a better job of protecting their children. Apparently, I failed. I let these families down.

Now, they’re walking in my shoes wondering how, in the 21st century, their child can die from a detectable and treatable heart condition. Think about that. It’s not a rare disease. We don’t need billions of dollars to find a cure. We have the technology. We have the treatments. We just need to look. We need to be a little curious, like my pediatrician was 10 years ago.

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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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The Journal of American Board of Family Medicine published a study in 2012 showing that 72 percent of all students that died from SCA reported having symptoms from the underlying heart conditions. I’ve met students who reported symptoms like a racing heart or fainting. They were later diagnosed with heart conditions. Prior to their diagnosis, their symptoms were dismissed as drinking too much soda and being dehydrated, respectively. The signs were there. We almost let those kids down. We need to be a little more curious…a little wiser.

SCA happens when the heart stops beating, suddenly and unexpectedly. It is not a heart attack. That’s what happens when blood can’t get to the heart. The conditions that cause SCA in children come in two varieties: structural and electrical.

Here are the warning signs: 1) fainting or seizures during or immediately after exercise, 2) unexplained shortness of breath, 3) dizziness during exercise, 4) extreme fatigue, and 5) a racing heart. Also, parents should be aware if a family member has died suddenly and unexpectedly before the age of 50.

So what’s next? The experts will debate the merits of making heart screenings a standard of care, while we continue to provide free eye and ear exams to students in schools. The lawmakers will debate the merits of placing AED devices in schools, even though each is already equipped with life-saving measures like fire alarms, sprinkler systems and security systems. However, starting tomorrow, we, the parents, can be more diligent and less dismissive about the warning signs of the underlying conditions.

My seemingly healthy baby, who was average height and weight and scored an 8 and 9 on his Apgar tests (used to quickly and summarily assess the health of newborn children immediately after birth), had an undetected heart condition. These two boys, energetic and vibrant students, described as “one of the kids everybody knew,” and “shy, funny and loveable,” had undetected heart conditions. The answers may be right in front of us. We just need to look.

As children, we learn not to judge a book by its cover. Remember, we need to look at what’s on the inside. It’s time to realize this saying applies to our children’s hearts too.

Do you agree that heart screenings should be standard for children? Let us know your thoughts in the comments section.

KIDS: Providing Children and Families a Voice in Medicine, Research, and Innovation

The active involvement of patients in health care choices, diseases, research, and innovation is an area of recent focus for many public and private entities (e.g., FDA’s Patient-Focused Drug Development initiative).  As an innovative method to engage children, the KIDS (Kids and Families Impacting Disease Through Science) project was launched as an advisory group of children, adolescents, and families focused on understanding, communicating about, and improving medicine, research, and innovation for children. KIDS is a unique collaboration between the American Academy of Pediatrics (AAP) Section on Advances in Therapeutics and Technology (SOATT), local AAP Chapters, children’s hospitals, local schools, and other partners.

The objectives for the KIDS project are as follows:

  • Learn, teach, and advocate for medicine, research, and innovation that improves the health and well-being of children;
  • Engage in the process through projects and consultation activities with hospitals, researchers, and other partners in the public and private sectors;
  • Provide input on research ideas, innovative solutions, unmet pediatric needs, and priorities;
  • Contribute to the design and implementation of clinical studies for children (e.g., assent, monitoring tools, schedules, etc.);
  • Serve as a critical voice for children and families in the medical, research, and innovation processes.

KIDS launched as a pilot program in Connecticut in September 2013 and will be expanding to other states in the US (e.g., Utah, New Jersey). The KIDS Connecticut Team has participated in meetings at Connecticut Children’s Medical Center (Hartford, CT) and Yale-New Haven Children’s Hospital, a Research Summit at Pfizer’s Connecticut Laboratories, and an advisory session with Mr. David Tabatsky, author of Write for Life.

In addition, the team attended the AAP’s Healthy Children Conference & Expo in Chicago in March, at which they staffed an exhibit booth highlighting their work and the importance of research and innovation for children. They also conducted survey-based research by collecting more than 300 responses with a focus on participants’ opinions of the importance of research in their lives and the role of children in research. Three KIDS Team Members delivered an invited Learning Zone presentation for conference attendees discussing the importance of research, the work of the KIDS Team, and the vision for future expansion. Finally, the KIDS interacted with numerous AAP leaders and staff members throughout the weekend. Overall, the KIDS involvement in the conference was a resounding success as each Team Member was articulate and passionate about their work and the importance of medicine and research. Feedback from attendees, exhibitors, and AAP leadership/staff was overwhelmingly positive. The Team will also be attending the Pediatric Academic Societies meeting in Vancouver in early May and will be collaborating with a similar children’s advisory group located in that city.

In addition to a KIDS expansion in the US, SOATT is working with existing young person advisory groups and other partners to develop an international network of children advisors. The children, families, leaders, and partners are very excited about the potential opportunities for these teams and the future network to make a significant impact on the health and well-being of children worldwide.

Do you think it is important for children to be involved in shaping pediatric medical research? Have you had experience with kids getting involved in their health care? What was the outcome? Share your thoughts in the comments section.

If you are interested in participating in this project or would like more information, please contact Charlie Thompson (charles.a.thompson@pfizer.com).

Taking Charge at the End of Your Life

Tim Prosch is author of AARP’s The Other Talk: A Guide to Talking with Your Adult Children About the Rest of Your Life, a book that helps parents and their children create a partnership to plan for the years to come, guiding them through important conversations and decisions about finances, medical care, and day-to-day living—before a crisis happens.

Tim Prosch

Tim Prosch

What can happen if you put off your end-of-life health care decisions until “the time is right?”

The Terri Schiavo case, which culminated in 2005, can put the answer to this question in stark relief.

Fifteen years earlier, Terri had collapsed at home, suffered severe brain damage and was put on a feeding tube to keep her alive. For the next decade and a half, she was yanked back and forth in a virulent tug-of-war between her husband and her parents about how she would want to be treated. Ultimately the courts got involved, pulling her off her feeding tube for 3 days in 2001, again for 6 days in 2003, and finally for 13 days in 2005, when she finally expired.

All of this drama and heartache could have been avoided if her wishes had been put in writing and had been thoroughly discussed by all interested parties.

While none of us will ever know what Terri wanted done at the end of her life, it is safe to say that her on-again, off-again existence and her increasingly toxic family dynamic are not what she or anyone else would wish for.

 

How can you avoid Terri’s fate? 

To begin with, it’s important that you understand that health care at your end of life will be a family affair, not just a personal decision. In most cases, it is not about you personally taking charge. It is about you preparing and empowering your family to take charge as you approach that final stage.

The-Other-TalkThe reason for this collaborative approach is that it is highly likely that you won’t be physically, emotionally, or mentally able to direct the final proceedings. Collaboration addresses the challenge for someone acting on your behalf to weigh the options and make decisions and to articulate what should be done in a way that reflects your thoughts about the end of your life.

As a result, it is critical that you start these conversations now while you are mentally sharp. Quite simply, the longer you wait, the less effective these discussions with your family will be, due to the natural deterioration of the aging brain.

In preparing for the end game discussion, you’ll want to take steps in two critical areas: guiding principles and parameters for medical treatment.

 

Step 1. Establish Your Guiding Principles

The first step in making your family confident and empowered in taking charge when the time comes is for you to confront and define what “being alive” means to you as you near the end.

For some people, it is fighting for every last breath. “Even one more day would be important to me. I would do everything I could to hold on to life.”

For others, it is living intensely, yet comfortably, in the time remaining. “I would rather be able to do what I want, to be with my kids, to enjoy life, even if it’s for a shorter time.”

Of course, neither one is the better approach because it is such a personal choice. But if you start now to build a clear understanding of your preferences with your family and your doctors, you can dramatically increase your odds of getting what you want.

 

Step 2. Set Parameters for Your Medical Treatment 

Step 2 in taking charge of your life (versus abdicating it to the medical community) is to put your preferences in writing. Equally important is to distribute and discuss your wishes with your family members and your doctors to ensure that your goals are clearly understood.

An effective and relatively inexpensive way to accomplish this is to consult with your legal advisor, then draw up a health care power of attorney. This document establishes your designated agent who will make health care decisions for you if you are not able to do so.

If you are in the “do not prolong life at any cost” camp, you will also want to explore two health care directives: the living will and the do-not-resuscitate (DNR) order:

  1. The living will establishes that you do not want your death to be artificially postponed. It states that if your attending physician determines that you have an incurable injury, disease or illness, procedures that only prolong the dying process should be withheld and the medical focus should shift to comfort care. This document must be signed by two witnesses who will not benefit from your death.
  2. The do-not-resuscitate (DNR) order is different from the health care power of attorney and the living will in that neither your health care agent nor you can prepare it. Rather, it is a written order signed by your physician that instructs other health care providers not to attempt CPR if your heart has stopped beating and if you have stopped breathing during cardiac or respiratory arrest.

Once you have shared your “what being alive means to me” documents (the health care power of attorney and, if relevant, the living will and the DNR order) and thoroughly discussed them with family and doctors, you all should acknowledge the possibility of revisions. Every time your health status changes in some significant way, you should have another discussion to clarify your views and expectations.

It’s okay for you to move the goalposts on issues pertaining to the end of your life. You just need to make certain that the people in your world know that you moved them.

Do you have a living will or DNR? What did you learn through the process that you’d like for others to know?

Click here to learn more about The Other Talk and here to hear an interview with the author from AARP.

Get Your Flu Shot Now to Stay Healthier Later

So you think you’re too busy to get your flu shot? It’s easy to put off, but taking the time to do it sooner rather than later could prevent you from getting sick while helping to protect those you care about – during the holidays and beyond. That’s why the U.S. Department of Health and Human Services (HHS), the Centers for Disease Control and Prevention (CDC), state and local health departments as well as other health agencies are raising visibility around National Influenza Vaccination Week (NIVW), from Dec. 8-14.

Paul DeMiglio

Paul DeMiglio

With the flu season beginning in the fall and not peaking until January-February, it’s certainly not too late to get your influenza shot. In fact, the CDC’s Advisory Committee on Immunization Practices recommends that everyone 6 months of age or older receive it, including:

  • Children
  • Seniors 65 and older
  • Pregnant women
  • American Indians and Alaska Natives
  • Those with underlying health conditions like asthma
  • Those living with conditions including chronic lung disease, heart disease, HIV/AIDS, cancer and diabetes

Although the effectiveness of flu vaccination varies each year, the CDC reports that recent studies demonstrate the evidence-based public health benefits. The Mayo Clinic agrees, calling flu shots your best defense against the flu, enabling “your body to develop the antibodies necessary to ward off influenza viruses.”

“The single best way to protect against the flu is to get vaccinated each year,” said CDC’s Anne Schuchat, M.D., Director, National Center for Immunization and Respiratory Diseases. “Today, flu vaccines are available in more convenient locations than ever. The few minutes it takes to get a flu vaccine can save you from experiencing several unproductive days due to influenza. The most common side effects are mild and short-lasting, especially when compared to symptoms of influenza infection.  Flu vaccine cannot cause flu illness.”

Despite evidence that the influenza vaccine is an effective tool, some still fear that getting their shot might put them at risk for experiencing severe side effects. No more than one or two cases per million people vaccinated acquire Guillain-Barré syndrome, an outcome much lower than the risk of developing severe complications from influenza. From 1976-2006, in fact, estimates show that far more people died from flu-associated deaths in the U.S. (3,000-49,000) than from negative reactions to the vaccines that protect against influenza.

To build awareness and support of NIVW and encourage people to get their shots, the CDC is making a rich variety of online tools and resources available to a wide spectrum of patients, educators and providers, such as:

Partnering with Reckitt Benckiser, Inc., the makers of LYSOL® Brand Products, the CDC is also spotlighting the Ounce of Prevention Campaign, which seeks to empower consumers and professionals with practical tips and information around effective hand hygiene and cleaning habits to prevent infectious diseases like the flu.

Click here to see if the vaccine is available in your area. To find a nearby location to get the vaccine, check out HHS’s “Flu Vaccine Finder” on Flu.gov, enter your ZIP code and share the widget to let your family members, colleagues and friends know where they can go too. HHS also provides a series of informative YouTube videos that cover prevention strategies, share tips for identifying symptoms and provide recommended treatment practices.

You can also make a powerful statement by taking the pledge to get vaccinated for the 2013-14 season, commit to taking a friend with you and in the process spread the word by clicking here. To get the latest updates on flu vaccination efforts, follow the CDC on Twitter (@CDCFlu and @CDCgov) and “like” them on Facebook.

Now tell us if you’ve gotten your flu shot. Where did you go? How long did it take? What ways could providers and health care stakeholders more effectively remind patients to get vaccinated?

Toys “R” Us Guide Makes the Season Brighter for Children with Special Needs

As we enter the holiday season, shoppers have the opportunity to turn to the Toy Guide for Differently-Abled Kids – an annual publication put out by Toys “R” Us. This valuable resource is designed to give parents, relatives, friends and professionals the information they need to make more educated choices about purchasing gifts for children with unique talents and abilities.

Paul DeMiglio

Paul DeMiglio

Gabby Douglas, a gold-medalist gymnast in the 2012 Olympics, is featured on this year’s edition and says the guide is “filled with everyday playthings, specially chosen to help kids build key skills, like creativity, language and critical thinking, reach new milestones and have fun at the same time.” Douglas is the most recent in a long line of celebrities and philanthropists who have appeared on the guide’s front cover, including Whoopi Goldberg, Eva Longoria and Maria Shriver.

“We understand the joy of watching a child experience victories through the magic of play, whether they’re learning to catch and throw a ball, role-playing through dress-up or learning to count using an app on their very first tablet,” said Kerry Smith, Toys “R” Us spokesperson. “For nearly two decades, we have been providing parents and caregivers with product recommendations for children with special needs through the trusted Toys“R”Us Toy Guide for Differently-Abled Kids. This annual resource is filled with everyday playthings selected as appropriate in helping kids build critical skills and reach new milestones – all while having fun at the same time.”

The guide provides shoppers with specific questions to help ensure that their selections match the developmental needs of the children for whom they’re shopping. Customers are encouraged to consider whether the toy fosters creativity and self-expression, if it provides a challenge without being frustrating, if it allows for adaptability to the child’s needs, whether the toy reflects the child’s interests and age, and much more.

The guide also shares numerous safety suggestions for parents and guardians so they can more effectively prevent accidental injuries and help children understand how to keep out of harm’s way during playtime:

  • Never leave a child unsupervised
  • Read labels for ability
  • Survey the play area
  • Establish concrete rules
  • Use visual warnings
  • Review and repeat
  • Prepare for off-site play dates
  • Click here for the full list

The toys were evaluated and tested by the National Lekotek Center, a non-profit that examines toys’ therapeutic qualities in aiding the development of children with physical, cognitive or developmental disabilities. A leader in the field with almost 30 years’ experience, Lekotek studies and reviews hundreds of toys, selecting those that benefit children. This information is then sent to Toys “R” Us for placement in the guide. Toys are categorized according to various child development needs such as visual, auditory, social skills and motor skills, among others.

If you would like to know more about the guide and the company’s philanthropic events, visit the new Toy Channel on YouTube, which includes an “‘R’ News” section that features information about charitable contributions. The guide can be found in any Toys “R” Us store or can be viewed online here.

Have you or someone you know ever used the Toy Guide for Differently-Abled Kids? Did it address your questions and make toy shopping for children with special needs easier? What challenges have you faced when purchasing toys for children with special needs, and what resources have you found helpful when making decisions?

Categories: Access to Care

Help A Sick Child this Holiday Season

No family should ever have to wonder whether they can afford to save their child’s life, but that very question haunts families all over the country, every day. Through the HealthWell Pediatric Assistance Fund,® however, we are working to change that — because no adult or child should go without health care because they can’t afford it.

In just two months, the HealthWell Foundation awarded  grants of up to $5,000 to more than 20 families. These grants help children like Anna, who was born with a rare disorder affecting the brain known as Sturge-Weber Syndrome. A grant from Pediatric Assistance Fund eased the financial burden that Anna’s family faced after the radical surgery she underwent to help stop her seizures and stroke-like episodes. Now instead of having to choose between paying the bills and affording life-saving treatment, Anna’s family can focus on her recovery and watching her grow up.

Photo (left): Earlier this year, Anna had surgery for a rare brain disorder. Photo (right): Now she is back home, seizure free -- healing and growing.

Photo (left): Earlier this year, Anna had surgery for a rare brain disorder.
Photo (right): Now she is back home, seizure free — healing and growing.

We want to empower even more families just like Anna’s, so they can afford the treatments their children desperately need. That’s why, during this season of giving, we’re urging you to donate to the Pediatric Assistance Fund so we can help the next family, just in time for the holidays. 100 percent of your tax-deductible gift will go directly to patient grants and services to help children start or continue critical medical treatments.

In the following letter, Anna’s mom Mary from Delta, Pennsylvania, shares the challenges of affording care for their little girl and the big difference that HealthWell’s Pediatric Assistance Fund grant made in their lives:

Our daughter, Anna was born with a birthmark on her face and scalp. The doctors suspected there was more to the story. A CT scan of her head confirmed the diagnosis of Sturge-Weber Syndrome, a rare disorder affecting the brain. We spent the next few weeks as new parents trying to understand our beautiful little girl and the rare disease she had. When she was just 3 weeks old, she had her first set of seizures. It was terrifying to see her little body so out of control. She was admitted to the hospital and started on medication. The doctors were able to control the seizures, but never for too long.

Since that first seizure many years ago, we have celebrated many days without seizures and suffered through the days when they eventually returned. We changed medications, avoided activity that might over fatigue her, struggled through specialized diets and prayed for a cure. In January, Anna was scheduled to undergo a radical surgery to remove the diseased half of her brain. We knew this could offer her a future without seizures, but we also knew the incredible cost we faced.

With the help of the HealthWell Foundation, Anna had her surgery. She is back home, seizure free – healing and growing. Our family has been able to focus our attention on Anna’s recovery knowing the financial burden has been reduced.

We are so grateful for the financial support the HealthWell Foundation has offered to us. With their help, we are able to celebrate the wonderful little girl God has blessed us with and we look forward to her bright future.

Give to the Pediatric Assistance Fund today so we can make life a little easier for more families with children facing chronic or life-altering conditions.

Categories: Cost-Savings

World Heart Day Underscores Why Exercise and Diet Count

This year’s World Heart Day on Sunday, September 29 will focus on raising awareness around changes that individuals – especially women and children – can incorporate into their daily habits to reduce the risk of developing cardiovascular disease (CVD).

Paul DeMiglio

Paul DeMiglio

Created in 2000 by the World Heart Federation (WHF) to highlight heart disease and stroke as the world’s leading causes of death claiming 17.3 million lives each year, advocates will educate the public about prevention strategies through talks and screenings, walks and runs, concerts and sporting events.

It is expected that by 2030, 23 million people will die of CVD, more than the entire population of Australia. Together with its members, WHF reports that 80 percent of premature deaths from CVD could be reduced if individuals take the following actions:

  • Reduce or discontinue use of tobacco
  • Eat healthfully
  • Engage in physical activity

CVD can affect people of all ages and population groups, including women and children, as illustrated in WHF’s infographic that also shares practical tips on how to eat more healthfully and exercise more frequently. To teach children about healthy heart living, WHF also created a leaflet along with a character, “Superheart,” that encourages:

  • Playing outdoor games
  • Cycling
  • Eating a diet rich in fruits and vegetables

The American Heart Association (AHA) recommends increasing daily servings of mostly plant-based foods to help improve cardio health, acknowledging that “many studies have shown that vegetarians seem to have a lower risk of obesity, coronary heart disease (which causes heart attack), high blood pressure, diabetes mellitus and some forms of cancer.”

To support better coronary health outcomes, AHA created five goals for healthy eating that encourage individuals to:

  • Eat more fruits and vegetables.
  • Consume more whole grain foods.
  • Use liquid vegetable oils such olive, canola, corn or safflower as your main kitchen fat.
  • Eat more chicken, fish and beans than other meats.
  • Read food labels to help you choose the healthiest option.

AHA also published an info sheet about the warning signs of a heart attack, which often starts slowly and usually goes unnoticed. This is especially true among women, whose symptoms can often mimic those of the flu. Additionally, it is common among women to put others first, especially their children, and so they usually do not recognize symptoms until it is too late. To address this public health challenge, AHA initiated the Go Red for Women campaign to empower women to know their risk, live more healthfully and share their stories.

The primary warning signs of a heart attack remain the same regardless of gender, however:

  • Chest discomfort
  • Discomfort in other areas of the upper body
  • Shortness of breath
  • Breaking out in a cold sweat, nausea or light headedness

Now tell us your story. Do you know anyone who experienced a heart attack or other heart condition? Are you aware of your own risk level? What could you, your friends or loved ones do differently to live more healthfully?

Juvenile Arthritis Awareness Month Underscores Efforts to Identify Causes and Develop Treatments

That’s right. Children get arthritis too. In fact, according to the Arthritis National Research Foundation (ANRF), nearly 300,000 children in the U.S. have been diagnosed with juvenile arthritis (JA) – one of the most common childhood diseases in the country.

Linda Barlow

Linda Barlow 

When Juvenile Rheumatoid Arthritis (JRA) first shows its symptoms in a child’s body, many parents write off swollen joints and fever as the flu, or think a sudden rash might have occurred from an allergic reaction. The symptoms might even recede slightly before showing up again, sometimes delaying diagnosis. 

Because a child’s immune system is not fully formed until about age 18, JRA can be especially virulent, compromising the body’s ability to fight normal diseases and leaving children open to complications that can adversely affect their eyes, bone growth and more.

Both the Arthritis Foundation and the ANRF are on the forefront of combatting this disease by supporting research into causes and treatments.

The ANRF’s Kelly Award is one example of how the organization dedicates part of its research effort toward treatment of JRA. The $75,000 grant is given annually to a researcher focused solely on JRA treatment and cures. For the past two years, the award went to Dr. Altan Ercan at Brigham & Women’s Hospital in Boston, whose work has the potential to provide novel targets for new therapies.

Another example is the Arthritis Foundation’s partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Through the partnership, the Foundation is working to create a network of pediatric rheumatologists and a registry of children with the disease, allowing researchers to identify and analyze differences and similarities between patients and their responses to treatment. Ultimately, the registry will help researchers cultivate personalized medicine, the ultimate weapon in battling the disease. The CARRA Registry has been launched at 60 clinical research sites and has enrolled 8,000 patients.

The Arthritis Foundation has also committed to providing more than $1.1 million in funding this year to researchers investigating a wide range of topics, including: 

  • Exploring how environmental and genomic factors might play a role in triggering juvenile arthritis; 
  • Collecting data and evaluating the efficacy of standardized treatment plans; and 
  • Developing and testing a smart phone app to help children cope with pain.

According to the Arthritis Foundation, there is no single test to diagnose JA. A diagnosis is based on a complete medical history and careful medical examination. Evaluation by a specialist and laboratory studies, including blood and urine tests, are often required. Imaging studies including X-rays or MRIs may also be needed to check for signs of joint or organ involvement.

“When joint pain, swelling or stiffness occurs in one or more of your child’s joints for at least six weeks, it’s important not to assume these symptoms are temporary, and to get a proper diagnosis from a pediatric arthritis specialist,” says Arthritis Foundation Vice President of Public Health Policy and Advocacy, Dr. Patience White. “Early medical treatment of juvenile arthritis can prevent serious, permanent damage to your child’s joints and enable her to live an active, full childhood.”  

Management of JA depends on the specific form of the disease but can include:

  • Care by a pediatric rheumatologist.
  • Nonsteroidal anti-inflammatory drugs (NSAIDs) to control pain and swelling.
  • Corticosteroids such as prednisone to relieve inflammation, taken either orally or injected into inflamed joints.
  • Biologic Response Modifiers (BRMs), such as anti-TNF drugs to inhibit proteins called cytokines, which promote an inflammatory response. These are injected under the skin or given as an infusion into the vein.
  • Disease-modifying anti-rheumatic drugs such as methotrexate, often used in conjunction with NSAIDs to treat joint inflammation and reduce the risk of bone and cartilage damage.

One promising therapy in the fight against juvenile arthritis has been recently approved by the Food and Drug Administration – Actemra (tocilizumab) – from Roche. Used to treat polyarticular juvenile idiopathic arthritis (PJIA), the medicine can be used in children ages 2 and older. It is also approved for the treatment of active systemic juvenile idiopathic arthritis (SJIA).

How can organizations like the Arthritis Foundation and the ANRF increase awareness that arthritis happens to children, and build support to advance development of research and therapies?

Eco-Friendly Strategies Plant Seeds for Long-Term Savings Among Hospitals

In the past couple of years, 149 hospitals saved $55 million as a result of developing and implementing environmentally friendly initiatives. So why are more and more health providers going green and what’s behind this rising trend?

David Sheon

David Sheon

“Increasingly health care leaders are recognizing the critical role environmental stewardship plays in quality health care,” said Janet Brown, Director of Facility Engagement, Practice Greenhealth. “Going Green is moving beyond the blue bin by the photo copier and in alignment with other strategic priorities – prevention, wellness, mission, staff engagement, community benefit, fiscal responsibility and the right thing to do.”

Hospitals are going green in many ways, from turning to sustainable energy to finding synergies in hospital transportation services. Dell’s Children’s Medical Center of Central Texas and Beth Israel Deaconess Medical Center in Boston, MA, illustrate how being environmentally friendly translates to significant cost savings. Both hospitals, in fact, earned platinum certification from LEED (leadership in energy and environmental design), the most widely recognized and widely used green building program in the world.

  • Dell’s Children’s Hospital saved $6.8 million as a result of a successful collaboration with Austin Energy that eliminated the need to build a central plant (source of energy typically used to power multiple buildings). Using a combined heat and power (CHP) system instead, Dell Children’s became one of the first hospitals in Texas to leverage an onsite energy system as its primary source of electricity and one of the first grid-independent hospitals in the U.S.
  • Beth Israel Deaconess Medical Center reduced its annual lab energy consumption by $270,000, while lessening its carbon footprint and maintaining a commitment to safety in lab and research facilities as a top priority. In addition to reducing its annual lab energy by recycling lab materials, the medical center also combined its transportation service with other hospitals, began using reusable plastic mugs, and sent their leftover food to the compost.

Health systems participating in the Healthier Hospital Initiative – a national campaign to improve environmental health and sustainability in health care through innovative approaches – also report strong fiscal returns:

  • The Hospital Corporation of America (HCA) saved $21.7 million by diverting 364 tons of waste through reprocessing single use devices in their hospitals.
  • Kaiser Permanente saved $4 million in annual energy costs after its initial purchase of environmentally responsible computers for all of their facilities.

Going green benefits stakeholders in health care and beyond. When hospitals reduce expenses through environmentally smart investments, they improve their overall long-term performance and encourage the community to make eco-conscious choices too. When hospitals save costs patients also benefit because the money can be put toward health practitioners or other needs to improve care.

“There are numerous win-win opportunities for cost saving environmental improvement strategies in the health care sector,” Brown said. “As health care leaders become increasingly engaged, environmental stewardship programming is further integrated into the day to day operations of the vibrant health care environment and its benefits are maximized.”

Are hospitals in your local community adopting environmentally friendly initiatives? What could they be doing to conserve energy, reduce waste or go green in some other way?

Categories: Cost-Savings