New Hurdles in the Sprint for Transplant

This blog post was made by Mary Beth Callahan, ACSW/LCSW on September 22, 2016.
New Hurdles in the Sprint for Transplant

If the ACA is available, why do people still need to fund raise for transplant readiness?

As I’ve practiced nephrology social work over the last 3 decades, I’ve seen many insurance changes—sometimes, the changes are real head shakers.

Many people dialyze at home to stay as healthy as possible for a transplant. The Affordable Care Act (ACA), known to some as Obamacare, has replaced high risk insurance pools in states that had those pools, and provided options for the chronically ill across the nation who could not get other insurance due to pre-existing conditions. For those who didn’t have other coverage, being able to get health insurance now has increased the possibility for transplant before dialysis in some cases, and made it possible to get vascular access for home hemodialysis or a peritoneal catheter earlier than if there were only Medicare. Yet, are there still gaps? Yes. Is fundraising for transplant still necessary? Yes!


As you may know, some states didn’t accept Medicaid expansion money for the ACA.  In these states, like Texas, in 2016, if an individual’s income is less than $11,770, the individual gets no tax credit for insurance premiums and no subsidy for copays & deductibles. If, however, an individual can project that their income will be $14,000 in 2016, they can get a SILVER PPO plan for $110 a month with a $100 yearly deductible. (NOTE: Check out the site to see what plans are available and their costs. Enrollment for most is from November 1-January 31, but for coverage that starts on January 1, the deadline to enroll is December 15. Those who qualify for a special enrollment period can sign up at other times.)

Here are some additional gaps:

YEARLY Integrated Deductibles

Whether a health plan is obtained through the ACA or an employer, known as an Employer Group Health Plan (EGHP), integrated deductibles are common and usually not something to which we look forward.

An integrated deductible means that nothing is paid—neither medications nor medical care—until the YEARLY deductible is met. Often that deductible is $3,000, but I had one person this year who had a $15,000 integrated deductible. The need to meet deductibles means that transplant patients with jobs may not be able to get their anti-rejection meds paid for until they pay the first $3,000 (or whatever the integrated deductible is) out of their own pockets. This is one reason why fundraising is more important now than ever.

MONTHLY Premiums 

Premiums, the monthly cost we pay for insurance, can vary. If patients are employed, usually, their employer shares this cost. Insurance premiums are becoming a larger share of cost for many of us. Fundraising is a good way to help with the cost of premiums.


Health plans often charge copays on medications, doctor visits, MRIs, and hospital stays. For medications, patients can search the name of a brand name online to see if there is a copay card. Copay cards for some medications provide help in the range of $3000 to 7000 per year or more. Additionally, sites like and others offer discounted rates on medications. Check these yearly, as the cost and source for the cheapest price will change each year and usually, a new copay card is needed yearly.


Medicare will end 3 years after transplant unless patients:

  • Are 65 or older
  • Are disabled for another reason
  • Have SSDI and have activated a trial work period (TWP) under Social Security

Besides the TWP, Social Security has many other work incentives that can help patients who receive SSDI or SSI. For many with chronic illnesses, lengthening the time Medicare lasts is a huge incentive that few activate.


For patients, keeping a job at the start of dialysis (at home or in-center) or with a transplant is a big help, not only financially, but in keeping chronic illness “in its place”. Patients who need help to make a job more doable can check out the Department of Labor’s Job Accommodation Network or the Stay at Work fact sheet.

Be sure your patients understand that Social Security views transplant as a disability for only 12 months after transplant. Their SSDI could stop 12 months after transplant, even if their Medicare continues for 3 years. In this case, they would still need to pay their Medicare premiums to keep that coverage.

If SSDI checks stop, patients would need to make arrangements to pay their Medicare premiums, which may be billed quarterly or can be paid annually automatically from a checking or savings account (Easy Pay).

Part of transplant readiness is trying to get and stay as physically fit as possible. Encourage your patients to ask their doctors about what exercises they can do daily to keep fit. The National Institute on Aging Go4Life site has free ideas for activities, exercise, and motivation for all of us.

When patients get ready to return to work, you can point them to the Choose Work site for information about the Social Security Ticket to Work program and the Department of Labor’s website Return to Work Toolkit for Employees and Employers.

Fundraising resources include:

National Foundations for Transplants (NFT) at (800) 489-3863 and their living donor fundraising program is a newer component of NFT. Previously, donors could only have funds raised for them under a program based on the recipient’s income (National Living Donor Assistance Center). The NFT program is different and is based on the donor’s income. Worth checking out in my opinion.

HelpHOPELive at (800) 642-8399

COTA for people with PKD and children under 21 at (800) 366.2682

National Living Donor Assistance Center at (888) 870-5002


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