The 5th Annual Roll on Capitol Hill Legislative and Advocacy Conference was held June 26 – 29, 2016 in Washington, DC. Many familiar faces, including our friends at Hollister Incorporated, were there to support advocacy efforts on behalf of wheelchair users nationwide. Hollister Incorporated is proud to be a Corporate Titanium sponsor of the United Spinal Association and the 2016 Roll on Capitol Hill.
Roll on Capitol Hill is United Spinal’s annual legislative advocacy event that addresses issues that impact the health, independence and quality of life of individuals living with spinal cord injuries and disorders. ROCH allows strong advocacy work to thrive as wheelchair users participate in coalitions and partnerships across a broad spectrum of issues important to United Spinal’s 47 chapters, 200 support groups and over 1 million individuals impacted by (SCI/D) and disorders across the country.
Founded in 1946, United Spinal Association provides advocacy and direct services to a large national constituency impacted by spinal cord injuries and disorders – including individuals with multiple sclerosis, spina bifida, ALS as well as disabled veterans.
This year’s Roll on Capitol Hill took on a variety of issues that impact people with spinal cord injuries and diseases. Some of the major legislative and advocacy issues addressed by participants included:
Durable Medical Equipment/Medical Supplies
• H.R. 1516/S. 1013 – Ensuring Access to Quality Complex Rehabilitation Technology Act of 2015
• H.R. 3229/S. 2196 – Exempting CRT wheelchairs and components from Medicare’s competitive bidding program
• Urology Supplies – Oppose expansion of competitive bidding
Community Supports and Services
• S. 2427 Disability Integration Act
Rehabilitation and Medical Research
• S. 800/H.R 1631 – Enhancing the Stature and Visibility of Medical Rehabilitation Research at the NIH Act
• S. 849/H.R. 292 – Advancing Research for Neurological Diseases Act of 2015
Tackling the Urology Issues Wheelchair Users Face Daily in the US
One of the largest focal points of this year’s Roll on Capitol was around the topic of urology issues that wheelchair users face as a result of paralysis and/or neurogenic bladder. Recent and proposed changes to Medicare, Medicaid and private insurance plans are a serious concern to those who depend on catheters for daily use.
It’s important to keep in mind that Medicare is not the only insurer whose policy creates access issues to necessary urological products. Many state Medicaid programs offer even more limited quantities, and even worse, many private insurance carriers don’t even offer coverage for urological supplies.
Remember, urologic catheters are prosthetic devices, meaning, they replace a malfunctioning body part. Even though they are disposable, they are not optional for a person who has a neurogenic bladder.
Information related to urology supplies and competitive bidding:
- Ostomy medical supplies are used by individuals living with colorectal cancer, bladder cancer, Crohn’s disease, ulcerative colitis, birth defects, and other intestinal or urinary medical conditions. People living with an ostomy have undergone surgery to remove their bladder or part of their bowel which impairs their ability to store and eliminate bodily waste. They have a surgically-created opening (stoma) in their abdomen for the discharge of waste. People use ostomy pouches on a daily basis and often for the rest of their lives to help restore the critical function of storing and removing bodily waste. Ostomy and related medical supplies are also necessary in cases of severe abdominal or pelvic trauma as a result of an accident including those sustained during military service.
- A proposal in the President’s FY2017 Budget expands the competitive bidding program to additional categories, including ostomy and urological supplies. This decision will limit access to prosthetic supplies which need to be clinically prescribed, selected, and/or adjusted and fitted for individuals by specially trained health care professionals based on the unique medical and physical needs of each person in relation to their disease or condition. The incorrect catheters or ostomy supplies can put individuals at risk of severe skin damage, infection, hospitalization and possibly death. Since ostomy and urological medical supplies restore the lost functions of waste storage and elimination, they are defined in the Social Security Act as prosthetics.
- Medicare, and other payers, need to ensure that individuals have access to the catheters and ostomy supplies prescribed for their use to avoid life–threatening infection and increased health care costs. Ostomy and urological products are clinically prescribed by health care professionals and finding the right product to address both clinical and lifestyle needs can take time and requires continual adjustment over the course of an individual’s life. There are approximately 450,000 people living with an ostomy in the United States and approximately a total of 400,000 people living with a spinal cord injury and with spina bifida in the United States.
With respect to urological product access concerns, the 2016 Roll on Capitol Hill aimed to persuade legislators to:
- Recognize ostomy and urologic supplies are prosthetics devices that replace an essential bodily function and not one-size-fits-all generics and not interchangeable
- Users of ostomy and/or urologic supplies have unique health care needs – supplies are prescribed, selected, adjusted, and fitted based on an individual’s unique condition
- By including ostomy and urologic supplies in the competitive bidding program, individuals who use these products would be subjected to the risk of infection, illness and skin damage by limiting their & their doctor’s choice of the product best suited for their unique needs.
The ideal outcome of meeting with state representatives and senators during Roll on Capitol Hill was to improve health care requirements and insurance coverage, so that prescribed products such as urological and ostomy supplies should continue to be excluded from the current competitive bidding program under Medicare for the following reasons:
- They are products prescribed by medical professionals to address a Medicare beneficiary’s life-sustaining medical needs, not a one-size-fits-all, off-the-shelf, or over-the-counter generic product.
- They require continual services from a health care professional for selection, fitting, training on use, adjustment, and to mitigate risk associated with health care conditions and clinical complexities that arise.
- The wrong prosthetic supply can result in severe skin damage, infection and illness resulting in hospitalization and increased health care costs.
- Ostomy and urological prosthetic supplies are not used with other durable medical equipment but rather function on their own, replacing a bodily function.
- A 2004 evaluation and report by the U.S. Department of Health and Human Services concluded that urological supplies were not well-suited for competitive bidding because there was insufficient potential for Medicare savings.
Roll on Capitol Hill: Advocacy in Action
Jenn Wolff, OTR/L and Manager, United Spinal Association Advocacy Alliance, says “The House was not in session so we met with staffers to educate them on the issues (improved Medicare coverage of wheelchairs/components and urologic supplies, the Disability Integration Act, and increased funding for neurologic research). Many of us had a chance to actually meet with our Senators and the impact is evident. Three Senators already have signed on to cosponsor the Complex Rehab Technology bill (Separate Medicare CRT Position Paper) and to the Protect Access to Essential CRT Components bill (Essential CRT Components Position Paper).”
“For every person who shares his/her story, we get a step closer to creating change,” Wolff continues. “Every year, I hear how important it is for Congress to hear personal stories. Much of what they hear is statistics and facts, but to make a policy meaningful, they need to hear about how it is affecting their constituents – us.
“The process to change legislation is not sexy, it is not easy, and the language is difficult to understand.” — Jenn Wolff, United Spinal Association Advocacy Alliance
So if you have had difficulty getting a wheelchair (Tell Congress about Denials and Difficulties Getting a Wheelchair)and/or repairs (Tell Congress about Your Difficulties Getting Repairs/Parts for Your Wheelchair) let your Senators AND your Representatives know! There is legislation on Capitol Hill that will make improvements for all users of Complex Rehab Technology, which includes all of us who use wheels instead of our legs or arms for mobility.”
Your e-mails and/or calls are extremely important in the next two weeks. ROCH hill visits were on June 28th and the wheelchair industry with wheelchair users will be making visits again on July 14th. Learn more at http://www.unitedspinal.org/events/roll-on-capitol-hill/.
Why Hollister Supports Ongoing Advocacy Efforts to Benefit Wheelchair Users
“The United Spinal Association member advocates who participate on the Roll on Capitol Hill are passionate and inspiring individuals. Supporting the Roll allows us to live our mission,” said Patrick Noble, General Manager Continence and Critical Care, Hollister Incorporated. “Our mission has always been ‘to make life more rewarding and dignified for people who use our products and services.’ It’s great to support the Roll on Capitol Hill because United Spinal is committed to educating their members and the disabled community on important legislative issues that could impact quality of life.”
Hollister Incorporated is an independent, employee-owned company that develops, manufactures, and markets healthcare products, educational materials and services worldwide. The company develops and manufactures products for ostomy care, continence care, and wound care, and also develops educational support materials for patients and healthcare professionals. Hollister Incorporated has been serving healthcare professionals and consumers for 95 years, and is committed to making life more rewarding and dignified for people who use the company’s products and services. To learn more, visit www.Hollister.com.
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