News

AOPA participates in the Amputee Coalition Hill Days Event April 16 and 17

In addition to scheduling 78 meetings for attendees with their Congressional Members and staff on the Hill on April 17, the Amputee Coalition held a training event the day prior to inform attendees of its legislative priorities and the asks they would be making during their meetings the following day. Ashlie White presented on the research studies that show increased quality of life and cost-effectiveness for patients who receive prosthetic intervention. Ashlie also presented on the provisions of the Medicare O&P Improvement Act (S. 1191/H.R. 2599)

The Amputee Coalition included S. 1191/H.R. 2599 as one of its main legislative priorities for attendees to discuss during their Hill meetings. The Amputee Coalition emphasized that people with limb loss and limb difference deserve their prosthetic care to be provided by qualified clinicians. The Coalition supports adoption of a final regulation for BIPA 427 to ensure that only qualified providers are able to provide O&P Care, removing prosthetic and custom orthotic devices from the DME category to distinguish the unique rehabilitative nature of these devices in comparison to DME supplies, and enacting the remaining provisions of the Medicare O&P Improvement Act.

As luck would have it, Tuesday was also scheduled the House Committee on Veterans Affairs Committee held a hearing on several bills, including the Injured and Amputee Veterans Bill of Rights (H.R. 2322), a Bill that has been championed by the National Association for the Advancement of Prosthetics and Orthotics (NAAOP). Several individuals with limb loss sat in the front row of the hearing as a sign of solidarity with Amputee veterans. AOPA included H.R. 2322 as one of its major policy initiatives during the 2018 Policy Forum in March, and was pleased to participate in the hearing on Tuesday.

Nicole Ver Kuilen is no stranger to facing challenges and overcoming obstacles. In fact, it is central to her existence, as an athlete, as an advocate, and as a person living with limb loss. She has just completed a 1,500-mile triathlon down the West Coast. Along the way, she shared her own story, and advocated for legislative changes to improve healthcare coverage for prosthetic care.

Nicole was diagnosed with bone cancer when she was 10 years old. A few months after her first chemo treatment, her medical team determined that her leg would need to be amputated to save her life.

Learning to use a prosthesis is a challenge, but children are resilient, and Nicole was ready to get on with her new normal. That summer, Nicole was faced with a challenge that she didn’t know how to overcome. “All I really wanted to do that summer was go play in the water with my friends, but I learned that my leg wasn’t waterproof” said Nicole.

Growing up near the Great Lakes in Michigan, Nicole was looking forward to the summer tradition, playing in the water with her friends and going to the water parks. Even showering became a limitation. Her family wrote their insurance provider to request approval for Nicole to receive a waterproof prosthesis, so that she would not have to face these types of limitations for the rest of her life.

Insurance denied the request. “They wrote back and said this is a convenience item, it’s not medically necessary; so, we didn’t really push it because we thought no meant no,” said Nicole. This was her first experience with being denied access to the prosthetic care she wanted and felt she needed. When she was 16, her high activity level was causing a lot of breakdown to her prosthesis, but Nicole was denied by her insurance company for a running prosthesis, despite her need for better technology to stay active.

“It wasn’t really until this past year that I really just got fed up with the system and the fact that I had been dealing with the same barriers over and over again for 16 years, said Nicole.” She was in the process of having a new prosthesis built and trying to find something that insurance would cover that would allow her to continue running half marathons and competing in bike races. “After jumping through all the hoops, 26 appointment and a year later, I basically had to settle for the same technology that I’d had for the past five years,” said Nicole.

Motivated by her own challenges with access to appropriate prosthetic technology and care combined with her growing awareness that so many others are unable to access the prosthetic care they need, Nicole launched ForrestStump.org and began planning the 1,500-mile journey, running, biking and swimming down the West Coast.

Nicole’s teammate and clinical support during the Forrest Stump journey, Natalie Harold, MSPO said, “I have to commend Nicole for the idea of Forrest Stump, because the whole goal wasn’t out of a place of selfishness. She had faced the same barriers over and over for 16 years, but she didn’t set out to get attention or raise money for herself. It was all bigger in scope.”

Natalie is new to the O&P profession, but wants to see more people living with limb loss get access to the appropriate technology for their prosthetic needs. “We’re not advocating for every amputee to get a running blade, because that is not appropriate for every amputee; we’re only asking that the technology that is available be accessible, when appropriate, to all amputees,” said Natalie.

Nicole and Natalie joined Dr. David Boone and University of Washington O&P student Justin Rheault for Hill visits during the 2018 AOPA Policy Forum.

Watch the videos below or listen to the Podcast to find out more about Forrest Stump and Nicole’s experience on Capitol Hill.

Nicole discusses her experience on Capitol Hill

Watch the full 17-minute Policy Forum Debrief

Podcast: Policy Forum Debrief with Nicole Ver Kuilen

By LUIS ANDRES HENAO

From Associated Press

June 23, 2017 8:39 AM EST

BUENOS AIRES, Argentina (AP) — Being born without fingers can be tough for any child. Getting new ones — especially red and blue superhero themed digits — has made 8-year-old Kaori Misue a vibrant playground star.

Flexing her wrist muscles to bend the plastic fingers, she can work with tape and stickers at an arts and crafts class. She can ride a bike, skip a rope and bake pastries with her mom. Her amazed friends have even begged to borrow the 3D printed hand, which looks a little like a cheerily colored Transformers toy strapped to her wrist.

“It was magical,” her mom, Karina Misue, said. “The confidence it gives kids is tremendous. They’re using it with pride.”

Hundreds of Argentine kids like Kaori who were born without limbs are now able to write, play sports and make music thanks to low-cost prosthetic hands devised by Gino Tubaro, a 21-year-old inventor whose work was praised by President Barack Obama during a visit to Argentina last year.

Tubaro’s “Limbs” project is part of a trend of open-source 3D printing technology initiatives around the world. They include the nonprofit e-NABLE organization that groups volunteers to provide hands and arms to those born with missing limbs or who lost them to war, disease or natural disaster, and the Build It Workspace studio, which teaches people how to use high-tech printers.

Growing up, Tubaro remembers breaking apart home appliances to try to turn them into new inventions. Instead of reprimanding him, his parents signed him up to a weekend workshop where he had free range to experiment. Along the way, he began earning awards for his designs.

When he began using 3D printers, the mother of a child who was missing a limb asked him if he could design a hand for her son. Tubaro delivered it in 2014, when he was still in high school.

Today, more than 500 people, mostly children, have received similar prostheses and 4,500 more remain on a waiting list. Basic designs are custom modified to fit the needs of each user with the help of orthopedists.

The project uses volunteers around the world who own 3D printers to print the pieces and assemble and deliver the hands. They can cost as little as $15 compared to sophisticated designs that are priced up to $15,000. Some of the pieces can be interchanged to fit a specific purpose: from playing pingpong to grabbing a fork or riding a bike.

If children outgrow a model, it can be easily replaced, perhaps with a different theme. A black Batman design can hurl plastic disks. A red and gold Iron Man version can shoot rubber bands.

“It’s a wonderful experience because we’re getting photos of kids using the prostheses in Thailand, Mexico, Egypt … doing things that they couldn’t do before,” Tubaro said about the project, which is partly financed by donations and award money.

“Seeing a kid wearing a hand from Iron Man, Batman or Princess (Elsa from Frozen) gives us so much pride,” said Tubaro, who divides his time between the project and his second-year studies in electrical engineering at National Technological University in Buenos Aires.

Misue said she found out about Tubaro’s project when she saw Obama praise his work on TV. She filled out a form requesting a hand at his atomiclab.org site and sent a photo of her daughter’s hand on squared paper.

Kaori wanted a light blue-and-white Princess Elsa model, but since they ran out of those, she got a bright blue and red one that she likes to match with her outfits.

“Now it’s got these colors and it looks like Wonder Woman,” Kaori said after she used her 3D printed hand to pick up a cupcake baked by her mother. “It’s just missing yellow, but it doesn’t matter because I can wear something yellow.”

Three national coalitions including sixty (60) national rehabilitation and disability organizations will host a Congressional briefing on the value of rehabilitation and habilitation services and devices. As Congress considers health care reform, it is critical that people with injuries, illnesses, and disabilities have continued access to rehabilitative and habilitative care.

Compelling speakers will highlight the importance of intensive inpatient hospital rehabilitation, outpatient rehabilitation and habilitation therapies, prosthetic limbs and other assistive devices and technologies. Speakers include:

• U.S. Senator Tammy Duckworth (D-IL) (invited): Bilateral leg amputee injured in Iraq
• U.S. Congressman Brian Mast (R-FL) Bilateral leg amputee injured in Afghanistan
• Eric LeGrand: Former Rutgers football player who sustained a spinal cord injury during a game
• Roseann Sdoia: Boston bombing survivor who sustained an above knee amputation
• Isabella Smith: Child with a developmental disability whose speech has benefitted from habilitative speech therapy

Powerful testimonials will be shared of personal injury, habilitation, rehabilitation, and recovery. Cutting-edge assistive devices and technologies will be demonstrated by users.

The briefing will take place on Tuesday, June 27, 2017 from 12:00 p.m. to 1:30 p.m., Eastern Time, in the Dirksen Senate Office Building, Room SD-106. Over 50 Senate staff visits that same day are also planned to bring the message directly to policymakers.

A Marine veteran who lost all four limbs after stepping on an explosive device in Afghanistan in 2010 is celebrating after successfully undergoing surgery for a double arm transplant.

John Peck, 31, underwent a 14-hour transplant surgery in August. His body rejected the transplant for the first few weeks, but the immune response was managed with medication. He will undergo weeks to months of physical therapy to encourage the nerves to grow and keep the muscles from withering. Sensation in the transplanted arms may take months to develop, as the nerves grow.

“My dream job since I was 12 is to become a chef,” he told reporters, and hopes to have a shot at his dream career with his new arms.

White House Fashion Show celebrates inclusive design, assistive technology, and prostheses. #DesignForAll

See a video of the fashion show, provided by the White House, as well as a recording of the closing remarks by Alison Cernich, Director of NICHD National Center for Medical Rehabilitation Research, below.

Alison Cernich discussed an ambitious research plan mapped by 17 institutes and centers at the National Institutes of Health during her closing statement at the White House Design for All Showcase.

See the full Design for All Fashion Show below.

Nine year old Zion, the youngest person in the country to undergo hand transplant surgery in July 2015 is doing well. He threw the first pitch at a recent Baltimore Orioles games, and has his sights on playing football.

Read the full story on the Washington Post.

Earlier this year, Medicare implemented a new policy on Comprehensive Care of Joint Replacement.  While positioned as a pilot test, all hospitals were forced to be involved.  Under this new program, hospitals are given financial incentives to reduce the total cost for hip and knee replacements.  If hospitals succeed in driving down the total costs, the hospitals keep a portion of the savings. If the hospitals fail to drive down the total costs, the hospitals will have to pay a portion of the tab.  If you are a Medicare patient, do you think this means you will receive the best quality of care or the cheapest?  If you said “cheapest”, keep reading to find out how Stark Rules could protect you from these “risk-sharing” deals.

The Stark Rules, also known as the Stark Laws, were created to help control conflicts of interest in medical care.  For example, they limit certain aspects of physician ownership of facilities to which physicians refer patients, including those facilities that provide blood tests and X-rays. In addition, they restrict other actions which could compromise the fundamental principle that patients can always look to their health care providers, first and foremost, to advocate for what is best for them as patients – not what makes them the most money.

As CMS/Medicare and other payers try to move aggressively toward “valued-based purchasing” and provider risk-sharing, CMS, private payers, and hospitals—all of whom stand to profit if others, namely providers, can be enticed to shoulder some of the risk and uncertainty that goes along with risk sharing—have found the Stark rules inconvenient and have beseeched their friends in Congress to do away with or, at least, substantially reduce the ‘teeth’ in the Stark Rules’ prohibitions on provider conflict of interest.  It is a game of big medicine vs. the little guys—patients and providers.  What we talk about as risk sharing today is very similar to what we used to call capitation, managed care, or HMOs.  If you think those things made things better for patients, then sure, do away with the Stark Rules and allow the system to create deals that operate to incentivize reductions in care to patients.

There is one aspect of how CMS has interpreted the Stark Rules that has proven particularly controversial, that being the in-office ancillary services (IOAS) exception, which among a number of other instances where it has permitted a measure of physician self-referral that the Stark Rules would NOT permit, this IOAS exemption granted by CMS has been used by some physicians to themselves deliver and bill to patients for prosthetics and/or orthotic devices supplies within the physician’s office or a related physically adjacent facility.  While AOPA and others oppose these broad interpretations of the in-office ancillary services exemption, it is important to recognize that eliminating the Stark Rules would open the door to even wider, essentially unlimited self-referral by hospitals, rehab facilities, as well as physician offices.  If you oppose the exemption CMS has granted in the in office ancillary services exemption, you very likely favor the underlying broad prohibition on self-referral (by physicians and other providers) that is embodied in the Stark Rules.  The bottom line, after all, is assuring the highest possible level and quality of patient care for prosthetic and orthotics patients.

However, if the Stark Rules are eliminated, Payers could set mechanisms to award all the business to the lowest bidder…again, patient beware.  Keep your eyes open, and let your voices be heard—with Congress, with your state legislators and others—it’s important!