Real World Health Care Blog

Tag Archives: pediatric

Focusing on Recovery, Not Financial Burdens

During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.


Did You Know?

HealthWell’s Pediatric Assistance Fund is the first of its kind. It was opened in response to families who had nowhere else to turn.


Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services, prescription drug copays and other out-of-pocket costs. This week, we’d like you to meet Anna, who was born with a rare disorder affecting the brain.

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.

Anna, after surgery, healing & growing

Anna, after surgery, healing & growing

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. Eventually, 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.

Help kids like Anna get the medical treatments they desperately need. Ask your employer today about how your donation to HealthWell’s Pediatric Assistance Fund can go farther with a matching gift program. Donate today.

“I Don’t Know What I Would Have Done without HealthWell”

During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.


Did You Know?

100 percent of donations to HealthWell go directly to patient grants and services.


Sophie

Sophie

Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services, prescription drug copays and other out-of-pocket costs. This week, we’d like you to meet the Ambassador of the Pediatric Assistance Fund, Sophie.

Sophie suffers from a chronic illness affecting millions of Americans: asthma. In her own words, Sophie describes what it’s like to live with asthma and how HealthWell helped her family afford the medication she needs.

“Finding HealthWell was like a breath of fresh air,” says Pat, Sophie’s father.

Sophie is one of 14 million children in the United States whose family is underinsured. You can help kids like Sophie afford the medical treatments they desperately need by donating your tax deductible gift to HealthWell’s Pediatric Assistance Fund. Donate today. Watch Sophie’s story.

Sophie TY

 

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).

Make Life a Little Easier for Sick Children This #GivingTuesday

Cyndi from Midland, TX didn’t know how she was going to pay for the asthma medication her son Ethan desperately needed. Feeling like nothing was going right and not knowing where to turn, she was on the verge of losing hope. Then something dramatic happened that would change everything. Cyndi discovered the HealthWell Foundation:

Cyndi didn't know how she was going to pay for her son Ethan's (right) asthma medication until she found the HealthWell Foundation.

Cyndi didn’t know how she was going to afford asthma medication for her son Ethan (right) until she applied to the HealthWell Foundation for financial assistance.

Our son was born very sick. He spent 5 weeks in the NICU, 2 of which were on a ventilator. When we finally brought him home, we knew I had to stay home with him. If we put him in daycare, we knew he would get sick and that would be hard on his lungs. With me not working, it put a huge cloud over our finances. We quickly found out that his asthma medication was not cheap, even with insurance. I also found out that there isn’t a lot of help for people who have insurance and a decent job. I spent hours and hours on the Internet and the phone trying to find some help. One day I found HealthWell. We applied thinking we would be denied. The day I got the acceptance letter in the mail, I sat on the kitchen floor and cried. I felt a sense of relief. Finally, something was going right. We cannot be more grateful for all the help HealthWell has given us. 

When you give to HealthWell’s Pediatric Assistance Fund for #GivingTuesday, you will make a difference for children who have been diagnosed with a chronic or life-altering condition, just in time for the holidays. Every penny of your donation will help us provide financial assistance to patients so they can afford the rising cost of care:

  • To date, HealthWell has awarded more than 274,000 grants to insured adults and children across all of our funds to help them afford treatments.
  • In just two months, we awarded grants of up to $5,000 to more than 20 families.

No family should ever have to wonder whether they can afford to save their child’s life. By giving to the Pediatric Assistance Fund, you will help us remain a lifeline for families so they can afford life-saving treatment for their sick children.

Your gift will help ensure that families with children who have chronic conditions – including leukemia, cystic fibrosis, or juvenile diabetes – are not forced to choose between paying the bills and affording quality care. Here’s a breakdown of how donations, large and small, will have a tangible impact:

  • $10 covers the cost of diabetes test strips for Michael for one month.
  • $45 supports Yessenia’s pituitary hormone treatment for 1 week.
  • $75 covers Quinnlian’s lesion treatment for immunosuppressive disease for one month.

Start the holidays off right by donating to HealthWell for #GivingTuesday and make life a little easier for more families like Ethan’s. Your gift will make the season brighter for children and families struggling to afford the medications or treatments they need.

Categories: Cost-Savings

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

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?