Organ Donation, Transplantation, and Personal Finance
One of the biggest impacts on my life occurred when I was 25 years old and newly married. A routine medical test detected a problem in the functioning of my kidneys. Further testing eventually determined that I had a chronic kidney disease known as Membranoproliferative Glomerulonephritis Type 1 (MPGN 1). I was told that there was a 50-75% chance of experiencing complete kidney failure in 10-15 years.
Fortunately, that timeline stretched out to 30 years, when my kidney function deteriorated to such an extent that I needed to go on peritoneal dialysis. After two years on dialysis, I received a kidney transplant from a living donor and have been leading a virtually normal life since then.
In this blog post, I focus on some of the personal financial implications of organ failure and related areas of organ transplants. Given my background, the organ I will focus on is the kidney.
When you need an organ transplant
Financial Concerns Pre-Dialysis
Depending on the pace of the deterioration of your health, there may not be a huge change in your financial circumstances. Certainly, the biggest new expense I recall from this period was the cost of prescription medication. At this stage, however, the drugs required are fairly conventional. The two most important drugs I needed at the time were to control my blood pressure and to help rid my body of water. While no one wants to pay for drugs, if you are part of an employer-sponsored group plan, the cost can be insignificant.
A second cost to consider, however, may be more significant. Depending on the state of your disease, you may need to make regular trips to see a nephrologist (kidney specialist). For more than 21 years, I have been living in London, Ontario, which is a major regional centre for the research and treatment of kidney disease, including organ transplants. Since moving here, I have never needed to make an out-of-town trip for healthcare. However, some people come to London from as far away as the Bruce Peninsula, which can be a 3-hour drive away. They may need to drive into London the evening before, stay in a hotel, spend all of the following morning in a clinic, and then drive back home. Depending on the nature of one’s employment, this can be an expensive drag on one’s income.
Financial Concerns While on Dialysis
There are two basic types of dialysis.
Peritoneal dialysis, which is what I used, required a week’s training at the hospital for both me and my wife, because it is done at home. Although a manual, gravity-based system can be used, most people use an automatic system that occurs through the night, which is what I used. You have to get the nightly set up right every time, maintaining a clean environment, as well as a sterile site where the catheter, a permanent tube that is placed in your abdomen (the peritoneum) and exits your body to connect to the dialysis machine. The machine pumps a sterile liquid into your body which absorbs the waste in your blood through a process of osmosis. Several exchanges of this fluid occur throughout the night.
Hemodialysis involves being connected to a machine that purifies your blood “extracorporeally,” that is, outside the body. If you have the space and can arrange for the new plumbing in your home to supply the machine with a supply of purified filtered water, home hemodialysis is an option. Otherwise, you will need to go to a dialysis centre.
Financial Concerns while on Dialysis
Some people may find it easier to work than others, but my experience was such that I was approved for long-term disability. This means that there are at least three actions needed that have financial implications.
Long-Term Disability Insurance
First, you need to apply for disability coverage. Given my long history with kidney disease, I was not eligible to apply for private coverage, but when I was hired at my last job before becoming an independent financial planner, I enrolled in the group plan with the highest level of coverage available. By the way, if you have a voice in the matter, I encourage you to advocate for paying for disability insurance coverage in your group plan so that you can receive the insurance payments tax-free if it comes to that.
My nephrologist generously gave of his time, without charge, to complete the paperwork that supported my disability claim.
CPP Disability Pension
Second, I was obliged by my insurance company to apply for the CPP disability pension. I would have done this anyway, but the group insurance policy, in this case, was that for every $100 received from the CPP disability pension, $90 would be reduced from my group disability insurance payments.
One thing to remember about the CPP disability pension is that you can deduct the months that you qualified for the pension from the calculation of your CPP retirement benefit, potentially improving the CPP that you will receive at retirement.
At the time, one of my children was a full-time university student, so he also received a CPP Children’s Benefit while I was receiving the disability benefit.
Disability Tax Credit
Third, I applied for the Disability Tax Credit. For the 2022 tax year, the federal disability amount is $8,873, which, when multiplied by the 15% credit equals a $1,331 reduction in your taxes. Each province also offers a credit.
Again, this was my experience so it may not apply to all, but the social worker assigned to the Nephrology clinic helped me to complete the necessary paperwork to qualify for these federal government benefits. If you are in this position, or you know someone who is, use the resources available.
Medical Expense Tax Credit
If your household (yourself, your spouse, dependent children under age 18) expenses for medical and related needs exceed 3% of the lower-earning spouse’s net income, or $2,479 federally, whichever is less, then you can claim the excess as a tax credit. You can go beyond prescription drugs and include expenses for medically related travel, accommodation, meals, and vehicle use. Records for these costs need to be documented, of course, in case you need to provide evidence.
Financial Concerns Post-Transplant
During the process of qualifying for the transplant that I eventually received, one of the big questions asked of me had to do with the supplemental health benefits that my wife and I had and whether the drugs I would be taking were covered under my respective plans. A complication in that calculation was that, while generic equivalents were available, the transplant clinic insists that the two main anti-rejection drugs I take be the brand name versions. If I had paid for my prescriptions “out-of-pocket,” it would have cost me just over $9,800 in 2021. As it was, I only had to pay $200. In Ontario, those without adequate supplemental health benefits from their employer can apply to the Trillium Drug Program. Those elsewhere in Canada can apply through their respective provincial support programs.
Depending on your circumstances, some or all of the above financial aids may also apply, if only for a relatively short period.
When you want to donate an organ
Donating an organ after you die takes little more than being willing to contemplate the reality that all of us are going to die someday. After that, you only need to go to your province or territory’s website to register your decision. You can find a list of where to register at the Canadian Transplant Society website. Well, there is one more thing to do. Tell your family and document your desire in your power of attorney for personal care or equivalent. Look here for more information on powers of attorney and personal directives.
Depending on the nature of your death, one person can save the lives of up to eight people. In the case of kidneys and livers, there is the possibility of donating while you are alive and healthy. There is a rigorous review of the physical and mental health of the donor, but most living donors recover quite well. The remaining kidney is more than adequate to take over the role by itself and those who donate part of their liver find that it regenerates to its normal size within a few months.
From the financial perspective, one area that might be of concern is the ability to obtain life insurance after a donation. Evidence is mixed on this. A research paper published in 2009 “found no evidence that kidney donors [in Canada] were disadvantaged in the first step of applying for life insurance.” However, in the United States, a study of those who sought to change their insurance provider after donating a kidney found that seven percent had difficulties with health insurance and 25 percent had similar difficulties with life insurance. These denials occurred even though living organ donors are much healthier than their peers because of the reviews of their health that they had to undergo to become eligible as a donor.
Reimbursement of Expenses
Living donors may apply for reimbursement of out-of-pocket expenses for travel, parking, meals, accommodation, and loss of income. These are provincially run programs, but going to the Kidney Foundation of Canada website will provide you with reimbursement information for your area.
How you can help
Register as an Organ Donor
Register your desire to be an organ donor here by finding the link to your provincial site here.
Donate to the Cause
As you can well imagine, organ donation is personally important to me. I have participated in a fundraising “Kidney Walk” in London, Ontario for the last several years. Money goes to the Kidney Foundation of Canada to support research into kidney disease and increase awareness of organ donation. If you are interested in donating financially, you may wish to “sponsor” my walk here. Donations of $20 or greater generate a tax receipt.
This is the 160th blog post for Russ Writes, first published on 2022-08-15.
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Disclaimer: This blog post is intended for general information and discussion purposes only. It should not be relied upon for investment, insurance, tax, or legal decisions.