Congressman Michael C. Burgess asks questions at the hearing.
Today, the House Energy and Commerce Health Subcommittee held a hearing to examine legislation to improve the Medicare Part B Drug Program. Included in the discussion was the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013 (H.R.1428). Testimony was given highlighting the importance of this legislation, which continues Medicare coverage of immunosuppressive drugs for the life of a kidney transplant.
The National Kidney Foundation submitted the following written testimony, which will be entered into the committee hearing record.
The National Kidney Foundation (NKF) is pleased that the Committee is holding a hearing today on legislation to help kidney transplant recipients obtain access to medications that are required to help maintain the viability of the transplanted kidney. NKF is America’s largest and oldest health organization dedicated to the awareness, prevention and treatment of kidney disease for millions of patients and their families and for tens of millions of people at risk. H.R. 1428, introduced by Representative Burgess (R-TX) and Representative Kind (D-WI), would extend Medicare Part B coverage of immunosuppressive drugs for kidney recipients who are non-aged and non-disabled. It is identical to legislation from the 112th Congress that garnered nearly 130 cosponsors.
Individuals with end-stage renal disease (ESRD), who require dialysis or a transplant to survive, are eligible for Medicare regardless of age or other disability as a result of legislation enacted by Congress in 1972. If these ESRD beneficiaries remain on dialysis, there is no time limit on their Medicare eligibility. However, despite quality of life benefits and the cost-effectiveness associated with transplantation compared to kidney dialysis, recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or finding other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, the patient returns to dialysis or receives another transplant, either of which is covered by Medicare. According to the U.S. Renal Data System 2012 Annual Report, Medicare spends about $86,300 annually on a dialysis patient, compared to $24,600 per year for a kidney transplant recipient after the year of transplant.Â
While the Affordable Care Act will improve the likelihood that kidney transplant recipients will gain health insurance, there are a number of individuals who are expected to remain uninsured after 2014 because they are unable to afford coverage in the Marketplaces. Furthermore, while States’ benchmark plans cover the most common immunosuppressive drugs (which mean the plans in the Marketplaces must also cover all of those drugs) the plans participating in the Marketplaces have flexibility in how patient cost-sharing for different drugs is designed. Some plans may place non-preferred drugs on higher tiers with higher patient cost sharing creating barriers for patients to access the medications that work best for them.
H.R. 1428 serves as a safety net for those who could not otherwise afford access to immunosuppressive medications needed to preserve their transplanted kidney. Medicare coverage would continue only for immunosuppressive medications; all other Medicare coverage would end 36 months after the transplant. It also requires group health plans to continue to pay for immunosuppressive drugs if they presently include such a benefit in their coverage, to prevent insurers from passing the obligation to Medicare. This bill will help improve transplant outcomes and enable more kidney patients who lack adequate drug coverage to consider transplantation. H.R. 1428 is the right thing to do for kidney patients, for living donors, organ donor families, and for the American taxpayer. Congress has acted previously in this regard, when it eliminated a similar 36 month immunosuppressive coverage limit for aged and disabled beneficiaries in 2000.
We thank you for your consideration of this legislation and urge its passage in the 113th Congress.
You can help us grab the attention of more Members of Congress by sending an email to your Senators and Representatives asking them to cosponsor this legislation.
Advocacy in Action 
Please recheck the links. I didn’t have any success when I clicked. I am a transplant patient and an adjunct at a community college. I live with the fear that my health insurance will be terminated at any time. Although I would like to work full time, employers are covertly averse to hiring someone full-time who has a transplant, especially now when health insurers are returning money to employees when they use less health insurance. In addition to helping transplant patients gain access to immunosuppressive medication, I think that it is important that we be added to the list of protected groups. This would even the “hiring field” for transplant patients, since quality of life depends upon access to medication and health insurance and we are at a disadvantage when it comes to gaining full time employment. Renee Mizrahi
Isn’t it illegal to discriminate? Sounds more like grounds for a lawsuit to me!
There are other transplant patients that require immunosuppressive drugs as well. IE: lung transplants. Will this bill cover then as well?
Hi Sue, thank you for your comment! This particular legislation is just for kidney transplant recipients, however we are hopeful that this is just the start of getting coverage for all transplant recipients.
They need legislation to allow transplant recipients to get BRAND NAME antirejection drugs! I’m on Medicaid and after 10 years post transplant, Medicaid tried to make me go on generic to see if they “work.” My own pharmacist warned me not to do this due to it not being the exact same drug. She said, “Do what you can to stay on Brand Name!” After changing to generic, and you end up with rejection issues, which from what I’ve learned happens often (due to the generic not having the same fillers and not the same exact amount of the active ingredient, fluctuating in the system to extremes) then you can go back on brand name. Not for me! I’m currently getting my Prograf from the drug company for free! Going on the second year for this. I don’t think experimenting with my Mothers ONLY available kidney, after ten years of no problems is worth it. Anyone who is experiencing this issue, find the name of the drug company that make your medications, call them or ask your doctor to fill out a “scholarship” for you to receive them for free from the drug companies !! I hope I’ve helped someone with this information.
Your awesome..thanks for the info…My son has FSGS someday needs a kidney transplant at 70% now.and on two immunsuppressent drugs prograff and celcept combo…I was told not to get Generic and we had to because of Medicaid. I am grateful for the insurance because I don’t have medical at my jobs, so my son does thru Medicaid. It frightens me that you say these things about the generic brands after transplant. And the difference between the generic and brand name that could possibly not work on him because he is sensitive to the meds as it is. I will look further into this. I hope the continue success with your transplant.
My name is Manuel Urrutia, I am 39 years old and have a kidney transplant. I am always worried about what would happen if I loss my insurance. Is very hard to feel that your kidney will be at risk if anybody with a transplant lost his insurance. If this “Extending Medicare Coverage for Immunosuppressive Drugs” will benefit all patients and their families reducing the risk of losing a transplant for money issues and also will decrease the number of patients going back to dialysis, which is more expensive than the immunosupressive drugs.
I hope this legislation will pass.
Good luck to all in America XXXXXX from UK
I am a 21 year old female on month 27 after my kidney transplant, about 2 years ago. I am currently going to school to be a nurse, while I am only just a server at a local restaurant. I am only to work when I am able. I do receive SSI at the beginning of each month. But yet I still struggle to make ends meet.
3 times a week I need to go to the University of Maryland Hospital for plamsapheresis treatment because my incurable kidney disease, FSGS, is starting to rear its ugly head. The trip takes about a 1/4 tank of gas, down and back. I need to go thru the Harbor Tunnel, which our mayor just increased that toll to 4.00 one way. I also need to pay for parking in Baltimore which is 7.00 with a patient discount.
So… One week of treatment adds up to about, $70.00 per week. In one month that’s $280.00.
If Medicare refuses to pay for my immunesuppresents. I could be paying about $800.00 in one month for the important medication I’m on.
If I’m unable to purchase them, my immune system will attack my transplanted kidney. There would be no use in another transplant because, the new kidney would only get attacked as well. Leaving me in a fatal position.
This is my life.. I feel like I can relate to many transplanted patients. And hopefully we will all continue to get the help that we need.
Thanks for reading this.
Megan-21 female.
Megan…My heart goes out to you. So young and you have a lot on your shoulders! I live in Dubai but am equally concerned with the outcome of this. Hope the dark cloud passes.
Author, Shades of Life, Sublime Joy is in Living: story of a kidney patient.
These drugs don’t have to be priced so high? Why after all these years are they still so high? Why on earth can’t the Food and Drug Ass. stop slowing down progress of new medicines? Other countries are making drugs that we’ve made but can’t provide our own people. It seems that our universities get lots of due to waste on project that will never pass the standards of FDA.
Agree…some reduction needed for life saving drugs.
I discovered your blog site on google and check a few of your early posts. Continue to keep up the very good operate. I just additional up your RSS feed to my MSN News Reader. Seeking forward to reading more from you later on!…
I am in the process of writing my capstone paper/project for my degree. I am writing about this very issue. This is a great blog and I appreciate the comments from transplant patients. I currently work at a hospital in the business office of the pharmacy dept so I am in contact with patients on a daily basis that cannot afford their meds. Will the extended coverage of these meds be paid at 80% or in full?
Hi Rebecca,
Thank you so much for your comments! Is your hospital a transplant center? What state are you in?
The legislation would cover 80% of prescription costs, similar to that for all other Medicare Part B benefits.
Thank you,
Erin Kahle
Constituent Services Director
National Kidney Foundation
So I am still working on this capstone project on this issue and proposed bill. I would like to know what are the obstacles to the passage of this bill?
Hi Rebecca,
The main obstacle is that while this is a cost-effective bill because it will help keep people off of dialysis, the Congressional Budget Office in the past has attached a “score” to the bill. Basically that means CBO estimates that passage of this bill will increase Medicare spending on these medications, but CBO is not able to fully factor in the cost savings related to a reduced need for dialysis. So because the bill is estimated to cost the government more money it becomes more challenging to pass it. However, with additional transplant recipients eligible for health insurance because of the Affordable Care Act, we anticipate CBO will find the cost of this legislation to be less than what it has been in previous years. Please feel free to email us at nkfadvocacy@kidney.org if you have additional questions.
Thanks,
Tonya Saffer
Senior Federal Health Policy Director.
Based on the information provided by the NKF above there are certainly enough supporting facts that would insure the passage of the Senate and House bills that would extend financial coverage for the required immunosuppressant drugs that would be in place for the life of the transplanted kidney. If these drugs were more affordable the 36-month Medicare plan might work for most transplant patients. However the fact remains that they are not affordable so without drug insurance coverage most transplant patients could not afford them. When faced with an undo financial hardship transplant patients will revert to whatever will make life affordable including Dialysis or Death. So I am one of those many transplant patients that would ask Congress to please pass these bills That now set before you and by doing so relieve the stress that so many people are now living under.
Thank you for your attention.
Keith E. Caro
I had a kidney/pancreas transplant 3 1/2 years ago and am doing great. My problem is I had great insurance that paid almost everything at the Mayo clinic in AZ. I turned down Medicare part A and B because of the great insurance coverage and I could get all brand name drugs. I am 62 and in 3 years I am loosing our company insurance. It sounds like Medicare part B will help pay for immunosuppressants if You were covered by medicare for your transplant and the 36 months after. Now what will happen with medicare coverage of my immunosuppressants and what med gap insurance, or supplemental insurance will provide name brand drugs. My husband was in pharmaceutical sales, and there truly are differences in drug effectiveness. I live in Idaho. Any suggestions?
Hi Janice,
I assume you will lose your company insurance because you plan on retiring at age 65. If you are still planning to work you may able to keep you company insurance. However, if you are planning on retiring you will be age eligible for Medicare at 65 and your immunosuppressive drugs will actually be covered under Medicare Part D permanently if your enroll in a Part D plan. Part B only covers immunosuppressive drugs if you were covered by Medicare at the time you received the transplant. Part D plans do include name brand drugs, but you often have to pay a higher co-payment. You can explore all of your Medicare options including Medigap supplemental insurance plans, and Medicare Advantage plans at http://www.medicare.gov. I encourage you to explore your options now as there is a lot of information on this web site, but please keep in mind that policies and health plans change, so what is available today may be different than what’s available when it comes time for you to enroll. Please feel free to email us at nkfadvocacy@kidney.org if you have more questions.
Thank you,
Tonya Saffer
Sr. Federal Health Policy Director
National Kidney Foundation
Im in Georgia and im on SSI I had Medicaid and insurance through my wifes job but starting Jan 1 2014 I will no longer have insurance through her job will Medicaid pay for my immune suppressant drugs?
Hi Damon,
Georgia does offer pharmacy benefits through Medicaid, but you would need to contact the Medicaid office to make sure that your prescriptions are covered. Here is the toll-free number 866-211-0950.
Thank you,
Tonya Saffer
Senior Federal Health Policy Director
I am a kidney transplant patient 2.5 yrs. ago. I have Medicare for about 6 more months. My private insurance company I had through my employer just went up more than 50% of my income due to the amount of claims I have had. NOT FAIR! Now my Medicare will run out in 6 months. I hope this bill passes and we get to keep what we have.
Thank you,
Joann Langley