Tag: health

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How to End Organ Transplantation Discrimination in Your State

Did you know that people with Down syndrome and other disabilities face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?

That’s why a little over a year ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and today Ohio Governor John Kasich signed the bill into law. You can read the bill here.

As the bill was being drafted a year ago, I learned about a story of organ transplant discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom, Jackie, was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.

Read Related Post Here: Little Ellie is Denied the Heart She Needs

3-year-old Ellie

As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Ellie’s story had an huge impact on the Ohio House members I spoke to, who were all equally as shocked as I was that this was indeed a “thing.”

Read Related Post Here: Ending Organ Transplantation Discrimination

The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.

If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit

I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.

Ohioans aren’t alone in their fight against organ transplant discrimination.  Seven states (Pennsylvania, Oregon, Maryland, California, New Jersey, Massachusetts, and Kansas) have already passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. One more (Delaware) currently has a bill working its way through the state legislature.

In most states, there are no checks and balances on the decisions transplant centers make.

Without regulations, personal bias and preconceptions can play a role in life-or-death decisions. Often doctors cite two reasons for discrimination based solely on disability:

  • Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
  • Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.
  • Luckily, we have faced no push back from the health care community for our bill here in Ohio.
My son at the Ohio Statehouse

Do you believe everyone, regardless of disability, deserves access to life-saving organs? Are you interested in advocating to end organ transplant discrimination in your own state? Comment below and I’ll be sure to get in touch with you.

 

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Parents and Non-Profit Advocate for New Medical Guidelines for Adults with Down Syndrome

“I was getting phone call after phone call from heartbroken parents about their once successful adult child with Down syndrome suddenly shutting down; having major health or mental problems. They have no where to turn. Most doctors don’t have the basic knowledge to treat adults with Down syndrome.”

Amy Van Bergen with her son, Wils

Amy Van Bergen says it was these regular phone calls she received serving as Executive Director of the Down Syndrome Association of Central Florida for the past 15 years that convinced her to start advocating for new medical guidelines for adults with Down syndrome.

The updated medical guidelines are long overdue. Although life expectancy has more than doubled for people with Down syndrome in the past 30 years, the new longevity often comes with a host of health problems. It is estimated 70% of people with Down syndrome will develop Alzheimer’s. They’re also at higher risk for many immune disorders and obesity. At the same time, they’re at lower risk for experiencing solid tumor cancers, heart attacks, and strokes. Because of this difference in pathology, adults with Down syndrome deserve unique medical care.

Read Related Post Here: Our Family LENDs Unique Perspective to Medical Professionals

Global Down Syndrome Foundation convinced Amy to use her contacts with other Down syndrome affiliates throughout the country to raise awareness and money for the development of new medical guidelines. The nonprofit spearheaded the initiative at the beginning of 2017, and hopes to have the guidelines approved by the end of 2018.

Global Down Syndrome Foundation is still raising money to finish the adult medical guidelines. Click here to donate!

The American Academy of Pediatrics already has medical guidelines for children and teens with Down syndrome. I bring these guidelines with me every time I take my 5-year-old to his annual well-check. Global says often young adults with Down syndrome “fall off a cliff” when they leave their pediatrician for a new doctor with no medical guidelines.

“We believe this important project will be a “first-in-kind” because (1) Global has enlisted a national medical guidelines organization to ensure there is an extensive literature review process and that any recommendation or guideline is evidence-based, (2) we are fortunate to have several leading U.S. medical practitioners expert in the care of adults with Down syndrome who have agreed to author the guidelines, (3) Global is committed to raising the funds needed in order to update the guidelines every five years so as to build upon new clinical research findings and improve the guidelines with each iteration,” explains Global’s Director of Adult Initiatives and Special Projects, Bryn Gelaro.

Modeled after the guidelines for children and teens, the new adult medical guidelines will include an easy-to-use list of medical assessments and tests adults with Down syndrome should take over the lifespan. “Short term we hope the guidelines improve the care adults receive by reducing the incidence of misdiagnosis, alerting doctors to the specific health needs of this population, and empowering adults and their families to seek proper care.  Long term we hope the guidelines build upon themselves, both in the breadth of the content areas covered and in the number of Down syndrome experts that collaborate as authors. We also hope that the guidelines, overtime, will highlight the holes in scientific literature related to Down syndrome so that researchers can address those gaps,” Bryn says.

Read Related Post Here: How to End Organ Transplantation Discrimination in Your State

In the end, it will be up to self-advocates, parents, adult siblings, and other caregivers to understand these new guidelines, and make sure their doctors’ do too. Many already understand the stakes are high. “I haven’t had to sell anyone on this project. They understand the importance,” Amy Van Bergen explains. “We’ve already raised more than $100,000 in the Down syndrome community. Our goal was $170,000. And Global will match what we raise.”

Amy will be at Down Syndrome Affiliates in Action Annual Leadership Conference this February. She hopes to meet her goal soon, so Global can finish their important work.

Donate to Global Down Syndrome Foundation’s Initiative Here! 

Do you have an adult child with Down syndrome? How will these medical guidelines impact your loved one? Comment below!

 

 

 

 

 

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Advocates Urge Congress to Increase Funding for Down Syndrome Research

We’ve learned a lot about Down syndrome since it was first identified 150 years ago, but there’s still a lot we don’t know. Now medical experts and advocates are urging Congress to properly fund research to better the lives of people with Down syndrome.

Self-advocate, national speaker and actor John Franklin Stephens urged the House Appropriations Committee on Wednesday to increase funding for Down syndrome research:

“I don’t feel like I should have to justify my existence, but to those that question the value of people with Down syndrome I would make three points. First, we are a medical gift to society. A blue print for medical research into cancer, Alzheimers, and immune system disorders. Second, a Harvard study found that people with Down syndrome and their families are happier than the larger society. Surely happiness is worth something. Thirdly, we are the canary in the eugenics coal mine. We are giving the world the chance to think about the ethics of choosing which humans get a chance at life,” Stephen’s proclaimed. 

Read Related Post Here: Self-Advocate Uses Fame to Spread Message of Inclusion

If you haven’t had a chance to hear his entire testimony, it’s worth the 8 minutes! Fellow advocates in attendance told me his speech was extremely moving and brought most in the committee room to tears.

According to Global Down Syndrome Foundation CEO and President, Michelle Sie Whitten, “there’s a significant disparity in Down syndrome research funding compared to other less common disorders.” The National Institutes of Health (NIH) decreased funding for Down Syndrome from $29 million to $14 million from 2001 to 2009. Whitten says this decline happened while funding to the NIH actually increased.

DS-Connect: What You Can Do Today to Help with Down Syndrome Research

Self-Advocates like John Franklin Stephens and even my 5-year-old son, Troy, stand ready to participate in research that will improve the lives of people with Down syndrome and all of humanity. A simple way they’ve done this is through DS-Connect.

It literally took me 5 minutes to complete the online NIH health registry with Troy’s information. Families can use the registry to connect with researchers medical providers, express interest in participating in clinical studies, take confidential health surveys that researchers can use to better understand the health of people with Down syndrome. Click here to join DS-Connect registry.

Another great opportunity to get involved is the Human Trisomy Project through the Linda Crnic Institute. By enrolling your loved one, researchers can better understand why people with Down syndrome are protected from certain medical conditions while being more susceptible to others. Click here to learn more.

Why should your loved one be involved in Down syndrome research?

Because of these startling facts:

100% of people with Down syndrome will have the brain pathology of Alzheimers by age 40.

30% of people with Down syndrome suffer from immune disorders

30% of people with Down syndrome fought leukemia; while all other types of cancers remain rare or non-existent for this population.

The big question is WHY? Researching Down syndrome may unlock answers to America’s top killers.

“Despite our advocacy, funding has been flat over the past decades. Despite being the leading cause of developmental delay, our funding has plummeted while NIH budget increase” laments Whitten at yesterday’s appropriation’s hearing.

Read Related Post Here: Ending Organ Transplantation Discrimination For People with Disabilities 

Executive Director of Linda Crnic Institute for Down Syndrome, Dr. Joaquin Espinosa, made the argument to committee members that increased NIH funding would also do more than help unlock clues to Alzheimers and cancer:

“There are 4 times as many people living with Down syndrome today as in the 1950s. Life expectancy has more than doubled since 1980s. People with Down Syndrome are here to stay. Simple interventions improved life expectancy. With specialized research people with Down syndrome will live longer, better lives. How much longer should people with Down syndrome wait to get their fair share of the biomedical research dollars? I think the time to act is now!”

Again, John Franklin Stephens brought the message home as a man living with Down syndrome:

“Let’s be America. Not Iceland and Denmark. Let’s solve problems and find solutions, not allow for “final solutions.” The number of people with Down syndrome is getting larger, not smaller, and so is the need. The American citizens living with Down syndrome deserve to know that their is funding and medical care available to them that allows them to reach their full potential. Let’s make our goal to be Alzheimer’s free, not Down syndrome free,” Stephen’s implores!

Members of both parties seemed overwhelmingly supportive of Stephens and other advocate’s plea for more NIH funding. The House Appropriations Committee will now move to vote on whether or not to increase funding for Down syndrome research within the NIH budget. I’ll keep you up-to-date on their vote.

Have you registered your love one with Down syndrome for DS-Connect or the Human Trisomy Project? Tell me what you think below.

 

 

 

 

 

 

 

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How to End Organ Transplantation Discrimination in Your State

Did you know that people with Down syndrome face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?

That’s why six months ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and recently went to the Ohio House Health Committee. You can read the bill here.

Autism Advocate, Jennifer Powers Alge, Representative Niraj Antani, and myself at the proponent hearing for Ohio H.B. 332

As the bill was being drafted I learned about a story of organ transplantation discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.

Read Related Post Here: Little Ellie is Denied the Heart She Needs

3-year-old Ellie

As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Yesterday, I was thrilled to walk the halls of the Ohio State House with Ellie and her family.

We testified in support of House Bill 332, and there wasn’t a dry eye in the committee room. I felt so privileged to give testimony in favor of Ellie and thousands of other people with disabilities that face barriers to life-saving health care. My speech  gave details that included the six other states that have passed similar legislation (Oregon, Pennsylvania, Maryland, California, New Jersey and Massachusetts). Two other states (Kansas and Delaware) are currently working on a bill in their state legislatures.

We also had a fellow advocate and Autism super-mom, Jennifer Power Alge, provide the perspective of families with loved ones with Autism. Down Syndrome Association of Central Ohio Executive Director, Kari Jones, gave insight into the amazing achievements of people with disabilities, and how all life is inherently worthy of life-saving health care. But by far, the star of the show was Ellie and her mom who told her story.

Read Related Post Here: Ending Organ Transplantation Discrimination

The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.

If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit

I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.

Our bill received a warm reception from Ohio House Health Committee members, who were also shocked that this was a real “thing.” The committee moved to the next step in the process, an opponent hearing and then a vote. So far, there as been no public opposition from transplant centers or doctors. Really the bill is not an attack on either of these institutions. There’s no penalty clause in the bill, but it does allow families to seek legal recourse to secure an organ transplant if they feel their loved one has been discriminated against. It’s more about ensuring families know they have greater legal protection to help advocate for their loved one when they need it most.

I will keep you posted on our bill as it moves forward. What are your thoughts on this issue? I love to hear from my readers, so leave a comment below or send me a private email. 

 

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Ending Organ Transplantation Discrimination

Ellie is a sassy, spunky, and very smart soon-to-be 3-year-old who loves preschool. Looking at this thriving preschooler you may be shocked to know that just months ago she and her family were fighting for her life. 

“Ellie was a hot mess even before she arrived. At 20-months pregnant we were told she would have a severe heart defect, and would likely need a heart transplant,” explains Ellie’s mom, Jackie. She went into heart failure at 15 days old, which escalated the need.

Ellie after open-heart surgery

A day after Thanksgiving, at 2 1/2 months old, the Ohio doctors said it was worse than they first thought. Ellie would need three open-heart surgeries.  They planned a heart cath to get a better idea of her current state.  The doctors explained that her risk factors for surgery had increased, but they gave Ellie a trach and g-tube and planned for a surgery that would stop the pulmonary hyper tension.

Doctors told Ellie’s mom, Jackie, that this surgery had to be wildly successful or Ellie wouldn’t be eligible for other surgical interventions and would be left with the very broken heart she was born with.  She’d have to live out what little was left of her life from there.

When her mom asked, “What about a heart transplant?”  With the knowledge that it was likely the only other option that would let Ellie survive, the doctor replied “Nope, not for her.” 

“Even if she qualified for the organ transplant waitlist, which she wouldn’t because she has Down syndrome, now she has other high risk factors that prohibits eligibility,” the doctor told Ellie’s mom. Jackie couldn’t believe it! What does Down syndrome have to do with a life-saving organ transplant?

Ellie’s family isn’t alone. A 2008 survey of organ transplant centers found that 85% consider neurodevelopmental status as a factor in determining eligibility.

The Americans with Disability Act protects against health care discrimination for individuals with disabilities, but enforcement is weak. That’s why I advocated for a state bill to address organ transplant waitlist discrimination in Ohio. My Ohio Representative, Niraj Antani, introduced the bill in August and Jackie Ward and I will be presenting proponent testimony in the Health Committee on Wednesday.

Here’s a copy of the bill.

“The possibility of a bill like this makes me tear up,” says Ellie’s mom, Jackie. “I was shocked that our doctor presented Down syndrome as a barrier for organ transplants. There are too many barriers for our kids already. We can handle difficulties in public and on the playground, but for a medical world that deems her life less valuable to save, that is unacceptable.”

Six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. Two more (Kansas and Delaware) currently have bills working their way through state legislatures.

In most states, there are no checks and balances on the decisions transplant centers make.

Without regulations, personal bias and preconceptions can play a role in life-or-death decisions. Often doctors cite two reasons for discrimination based solely on disability:

  • Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
  • Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.

Jackie realizes her daughter had other risk factors that may play a role in eligibility, but Down syndrome shouldn’t be one. “We were devastated! We just couldn’t imagine going home and watching our Ellie die,” Jackie explains.

The family didn’t give up without a fight.

Before her visit to Boston Children’s

“We looked to the top cardio-thoracic surgeons in the United States to find a doctor that thought she was savable,” Jackie describes. They ended up at Boston Children’s Hospital. “They said they don’t see any reason why they couldn’t do a regular repair, and give her the new heart she deserved.”

After six hours in the operating room, Ellie’s mom Jackie says her 9-month-old baby came out looking pink for the first time in her entire life. “She recovered beautifully! For the first time in 9 months we could take a breath and see past today. She had a real future,” Jackie exclaims.

Next week is Ellie’s third birthday, and every year since her heart surgeries the family sends her medical team an update. Jackie wants them to know “Ellie loves openly and brings joy to each and every day.”

Message me if you want help advocating for similar legislation in your state.