Category Archives: Guest Posts

The AHCA and Paralysis


We are pleased to publish this guest post on our SPINALpedia blog by the Outreach Team at Disability Benefits Help.

On May 4th, the American Health Care Act, or AHCA passed in the House of Representatives. This new healthcare bill is the first attempt at repealing the Affordable Care Act. The AHCA has some sections that are concerning for people with paralysis or another spinal cord injury. Here are some ways the AHCA might affect you and your family if the bill does pass as-is:

1. You might have higher premiums

While the AHCA assures us that everyone will have access to health care, the MacArthur amendment does allow states to file for a waiver that exempts it from some components of the Affordable Care Act. With a waiver, insurance companies in some states could charge people with pre existing conditions significantly more than healthier young adults.

So how much would paralysis cost? It’s hard to know exactly how much your premium could rise, but paralysis would without a doubt be considered a preexisting condition. The amount your insurance might rise would depend on your age and the state where you live, but this interactive map can give you some kind of idea how much you might be affected before paralysis is factored into the equation. Some people see the cost of health insurance rise by $40,000.

What’s more detrimental for people with paralysis or another catastrophic spinal cord injury is the MacArthur amendment allows insurers to put lifetime caps on those with preexisting conditions or disabilities. A catastrophic injury like paralysis can cost over $5,000,000 over someone’s lifetime. A lifetime cap would leave millions of people with paralysis without insurance.

2. Funding would be allotted for people with catastrophic injuries, but the AHCA has not given enough.

The AHCA includes high-risk pools for people with disabilities who are denied insurance, such as those with a spinal cord injury. The AHCA set aside $130 billion over the next decade to help fund these pools and get everyone insurance, but this plan would only work if a handful of small states file for the MacArthur waivers.

Some experts believe $130 billion is not nearly enough funding. Conservative estimates guess that the pools will need $25 billion per year to cover everyone in need. This means the pools need an additional $100 billion to work as planned.

3. If you or someone you love is in an assisted living center, you may lose insurance.

One of the biggest changes the AHCA looks to make is cutting funding to Medicaid. Many people with paralysis live in an assisted living center, which can cost over $100,000 per year out of pocket. Medicaid supports millions of people with disabilities and makes specialized care possible. Up to 60% of people in assisted living centers and nursing homes are enrolled on Medicaid.

Currently, Medicaid is an entitlement program. This means states receive funding as needed for people who qualify. As the AHCA stands now, Medicaid would become a grant program. This would again potentially impose lifetime caps, which is simply not an option for someone with a catastrophic spinal cord injury due to the enormous costs of health care.

What can we do?

The most important thing to keep in mind is that the AHCA is not law yet. In fact, the Senate has expressed that it wishes to rework the health care bill to make it better for all Americans.

You can call your local Senators to tell them to vote NO on the AHCA. Find the contact information for your local Senators here and call them directly.

The AHCA is completely unacceptable for millions of Americans, but we can fight to make health care accessible for everyone.

This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at or by contacting them at

Through An Intern’s Eyes: Meet Taryn


My name is Taryn Spiegel and I’m a senior in Nursing from University of Maryland College Park. I came across SPINALpedia through my family friend, Ali, who told me this unbelievable story about one of her friends from high school who had been in an accident on a family vacation at the beach.

After hearing Josh’s inspirational story, how he started this foundation and his positive outlook on life, I knew that this is where I wanted to do my internship for my final semester of college.

Starting my internship with SPINALpedia has already been a blessing and it has just begun. Before this opportunity, my knowledge of spinal cord injuries was a bare minimum. I was unaware of the various types of injuries and the types of accidents that could potentially cause them. I was even unaware of the amount of individuals affected by spinal cord injuries. These statistics have been eye opening.

Aside from the basic facts, prior to this internship I had no idea how much physical potential there was for those with injuries as well. Spending hours on the SPINALpedia website has given me the opportunity to watch and read success stories, sports and athletics people can participate in after being injured, adjusting to life after the injury and basic day-to-day activities that people with SCI engage in.

While I’m almost embarrassed to say this, I also didn’t know how many spinal cord injury treatments existed.  Stem cell research is a big area that has helped develop a number of treatments for spinal cord injuries. Matthew Reeve, the son of the late Christopher Reeve, has also been busy promoting the progress made in an exciting epidural stimulation treatment funded by the Christopher Reeve Foundation that restores movement to people’s legs and ankles (read more).

Matthew has  been raising funds for this research. He hopes to raise 15 million dollars for the next 36 patients interested in this treatment. His ultimate goal is to eventually accelerate the research and give the treatment to anyone that needs it. (watch)

There has also been new generations of exoskeletons for mobility and training in medical recovery. Scientists have been teaching spinal cord injured individuals how to move limbs by thought, merely my implanting a chip called a brain computer interface. Fascinating stuff.

During the initial “the SCI boot camp process” at SPINALpedia, I learned a lot of interesting information about spinal cord injuries. One of my favorite videos I watched was about a peer mentor group up in British Columbia (watch). It’s inspiring to see someone learn from someone else who has been in their shoes and has gone through what they’re dealing with.

Throughout this semester, I hope to learn more about the spinal cord injury community as a whole and about individual members through SPINAlpedia’ s many channels. It would mean so much if I could contribute in some way to better a person’s life with the spinal cord injury. I truly hope my experiences this semester encourage others to get involved with SPINAlpedia’s efforts.