THE JACK REYNOLDS MEMORIAL MEDIGAP EXPANSION ACT: WHO IS GETTING LEFT BEHIND
1. Introduction
This blog is about the Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) Senate version coming soon. Kidney failure (also known as end-stage renal disease, or ESRD) is the last stage of chronic kidney disease, when the kidneys no longer function. People with kidney failure must receive ongoing, regular dialysis treatments or obtain a kidney transplant to survive. Most Americans with kidney failure are eligible for Medicare, regardless of age; those under the age of 65 are eligible for Medicare as their primary insurance due to their ESRD status, and they need access to private Medigap (Medicare supplemental insurance) plans just like patients who are 65 or older.
2. Where The Gap Comes In
Federal law stipulates that Medigap insurers must offer plans to all beneficiaries age 65 and over, but state law dictates Medigap policy for Medicare beneficiaries under 65. There are currently 20 states in which Medigap providers are not required to offer Medigap plans to ESRD Medicare beneficiaries under the age of 65, leaving patients with high out-of-pocket costs. Medicare coverage for dialysis patients is not enough. Medicare covers only 80% of the costs of outpatient procedures like dialysis, which means patients must pay the remaining 20% coinsurance with no annual out-of-pocket maximum. Medicare beneficiaries on dialysis face out-of-pocket costs of about $10,000 every year—an extreme cost for the more than 80% of people on dialysis who are too sick to work. This is simply unaffordable for many patients and can cause them to spiral into bankruptcy.
3. Kidney Transplant Issue
Additionally, ESRD Medicare beneficiaries are required to have supplemental insurance in order to be added to the kidney transplant waiting list, as Medicare alone is not considered full coverage by transplant centers across the nation. For most Medicare beneficiaries, Medigap is their secondary insurance. Without access to Medigap plans, ESRD Medicare beneficiaries under 65 cannot access kidney transplantation—the best treatment option for people with kidney failure because it increases the chances of living a longer, healthier life.
4. Who Was Jack Reynolds ?
I was at an awards dinner in WDC, with the Dialysis Patient Citizens. BTW, one of the honorees at that dinner was a great kidney advocate, Jack Reynolds, whose name is attached to one of the pieces of legislation we are going to discuss with pop you today, The Jack Reynolds Memorial Medigap Expansion Act. I knew Jack personally and had the opportunity to advocate with him in DC. He was a farm boy at the age of 4 had a 100 gallon barrel of water crushing his abdomen. By the age of 22, he went on dialysis, and remained on dialysis for over 45 years. He would later become a founding member of the DPC, President of the DPC, and a lifelong fighter for kidney justice. He even appeared in 2 major motion pictures, Nebraska and Downsizing. He was the patient who was on dialysis the longest in the history of Iowa.
5. Benefits of the Jack Reynolds Memorial Medigap Expansion Act
The Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) would require insurers nationwide to offer the same Medigap plans to ESRD Medicare beneficiaries under age 65 that all Medicare beneficiaries over age 65 have access to. The bill would provide a vital insurance option to dialysis patients to help protect them against high out-of-pockets costs, and it would give dialysis patients on Medicare the full insurance coverage they need to be accepted onto the kidney transplant waiting list.
To cosponsor this important legislation please contact Denise Fleming in Rep. Cindy Axne’s office at denise.fleming@mail.house.gov or Adriianna Lagorio in Rep. Jaime Herrera Beutler’s office at adriianna.lagorio@mail.house.gov.
For more information about the Jack Reynolds Memorial Medigap Expansion Act, please contact the American Kidney Fund: Holly Bode, Vice President of Government Affairs, hbode@kidneyfund.org Deborah Darcy, Director of Government Affairs, ddarcy@kidneyfund.org
6. Melissa Tuff's Story
When Mel was 16, after she was diagnosed with ESRD and placed on dialysis, she was actually over insured. She was qualified. She had Medicare, as a minor she was covered by Blue Cross/Blue Shield under her mother's policy, and Medicaid. She went through a difficult period. After being transplanted at the University of Michigan, Ann Arbor. October 7th, 2005, her kidney rejected in 2016 after 11 years. She was hospitalized all told for a month. As a result of her hospitalization, she lost her job, her home, her car & her marriage. To keep body and soul together, she moved in with her Dad in Florida. Here original intent was to have a dual listing in both Michigan and Florida, increasing her chances of getting a kidney transplant. Melissa is a difficult match as she had a number treatments to prevent rejection causing a high rate of antibodies. At the time of the move, the average wait time in Florida was much shorter than the average wait time in Michigan. Because when she moved to Florida, she lost all her supplemental/20% gap coverage, the University of Michigan informed her that she could no longer list with them. Her attempts to obtain Medicaid coverage in Florida were in vain, because she made $15 too much monthly to qualify. She was then put on a share of cost plan, meaning Medicaid coverage would only pick up after she met her out of pocket assigned share of costs of $1,314 a month. This program was of no help to Mel, because it is a state insurance program, and valid only in the state of residency, Florida. She tried to obtain supplemental coverage in Florida, but was denied based on age issues and on the basis of a pre-existing condition, even at the highest rate of $900/m for Medigap or Medicare Advantage. She was forced to withdraw her listing from Michigan. When she did her financial interview as part of her Pre-Transplant evaluation at Tampa General Hospital, she was informed by the financial coordinator that because she did not have a secondary, and due to your high share of cost, she would be required to have $12,584 in savings. This figure reflected the $4,700 “doughnut hole” in your part D prescription coverage plus 6 months of the $1314 share of cost required before Medicaid would begin covering additional medical expenses. This pre-transplant deposit issue is extensively discussed here: https://youtu.be/xYy2PR_PLW4. To raise the money to meet her current dialysis expenses as well as her pre-transplant deposit requirements, Melissa has enlisted the services of Help Hope Live, a nonprofit that specializes in fundraising for patients in need of organ transplant, where the monies raised are not income to Mel and are 100% tax deductible to the donor. For more information check here: https://helphopelive.org/campaign/9104/
As Melissa said in her own words: "6 years later, life would be easier with a secondary. I still have quite a bit of monthly medical expenses and my dialysis treatments are only covered at 80% leaving me on the hook for the rest. A secondary plan would greatly reduce my monthly responsibility and afford me the luxury of being listed in multiple states which would greatly increase my chances of getting a new kidney." https://kidneystoriesonblogger.blogspot.com/2021/04/mels-insurance-adventure-in-her-own.html?m=1 There's some light at the end of the tunnel, as under a paired donation program at a second transplant center, Cleveland Clinic, in August of 2019 setting off a chain of donations. Because Mel's donor donated to someone else, the next matching kidney would go to Mel. She has been waiting almost 2 years now. To keep up with Melissa Tuff' s status check out her advocacy page here: https://m.facebook.com/MelNeedsAKidney/ For more information on Mel, check out her most recent interview: https://youtu.be/XnqjJM7rW0E
7. A Word of Warning
I checked with a couple of other kidney advocacy groups on this law. Concern was expressed that the law could be couple with other laws not benefiting kidney patients and some of the lobbyists on the law are not favorable to kidney patients. If circumstances change, I will let you know.
8. Conclusion
Underage ESRD/Medicare patients face potentially large amounts of debt without supplemental insurance like Medigap coverage. Many States do not offer a Medigap plan. Medicare Advantage plans are network plans and your doctor may not be included in the network. The Jack Reynolds Memorial Medigap Expansion Act would require states to make Medigap Plans available to those under 65. Please consider supporting this law by following the link: https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=376
9. References
A. The Jack Reynolds Memorial Medigap Expansion Act
https://www.congress.gov/bill/117th-congress/house-bill/1676?s=1&r=17
https://www.govtrack.us/congress/bills/117/hr1676
B. What is Medigap Coverage?
https://www.medicare.gov/supplements-other-insurance/whats-medicare-supplement-insurance-medigap
C. American Kidney Fund Materials on Where the Gap Comes In, Challenges Getting Listed for Transplant & Benefits of the Jack Reynolds Memorial Medigap Expansion Act
https://www.kidneyfund.org/news/news-releases/akf-applauds-introduction-of-jack-reynolds-memorial-medigap-expansion-act.html
AKF Leave Behind Document on the Jack Reynolds Memorial Medigap Expansion Act: https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdocumentcloud.adobe.com%2Flink%2Freview%3Furi%3Durn%3Aaaid%3Ascds%3AUS%3A30994208-fd94-4b87-a947-bf12a834a5c7&data=04%7C01%7C%7Ca2cbbc9f10ef4bc7233d08d9028c58c2%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C637543624063652221%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&sdata=kXiyfubHS%2Bqof4UIk2Bm8h69pJCpX7dFhJTIZBZeOug%3D&reserved=0
Ask your U.S. Representative to Cosponsor Medigap Legislation https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=376
"Your ability to afford health care shouldn't depend on where you live. But in 20 states, #ESRD patients under 65 on #Medicare are not able to purchase #Medigap coverage, exposing them to unaffordable out-of-pocket costs." 10:25 AM · Mar 10, 2021·Twitter Web App
D. Who Was Jack Reynolds?
https://action.momsrising.org/sign/medigap-kidney-2021/ https://axne.house.gov/media/press-releases/reps-axne-and-herrera-beutler-introduce-jack-reynolds-memorial-medigap
https://www.dialysispatients.org/news/sen-grassley-leaders-in-dialysis-community-pay-tribute-to-the-late-jack-reynolds-former-dpc-president-and-founding-board-member/
https://www.dialysispatients.org/news/reintroduction-of-jack-reynolds-memorial-medigap-expansion-act/
https://www.prnewswire.com/news-releases/dialysis-patient-citizens-commends-reintroduction-of-the-jack-reynolds-memorial-medigap-expansion-act-301243993.html
http://jasonyang9.com/board-members/jack-reynolds.html
E. Melissa Tuff's Story https://youtu.be/XnqjJM7rW0E https://youtu.be/xYy2PR_PLW4 https://helphopelive.org/campaign/9104/ https://m.facebook.com/MelNeedsAKidney/ https://kidneystoriesonblogger.blogspot.com/2021/04/mels-insurance-adventure-in-her-own.html?m=1
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