Dear Representative Miller,

On May 14, 2019, I donated one of my kidneys to save the life of a neighbor’s son. I am writing to you,
even as my surgery wounds haven’t completely healed, because the financial repercussions for time off
and the possibility of a long term impact to my health and life insurance were all more concerning to me
than the actual surgery. I am reaching out to you in the hope that you can enact change to help protect
me and the other 66 Kentucky living donors each year (avg 2011-2018) and with the hope that the bills
you write will allow others the needed relief to be able to provide this gift.

My story of donation began before I was born. In the late 70’s, my uncle Bill was diagnosed with
leukemia. He needed a bone marrow transplant to have a chance at living. None of his family matched,
and they couldn’t find a match outside the family. Bill died at the age of 16 just before I was born. Flash
forward to 2019 in the age of social media. Our neighborhood in East Louisville has a Facebook page
limited to our neighbors. In January, Derek Alldaffer sent out a desperate plea for a living donor for his
son. Jackson was fighting a disease that affects one in a million people, and his kidneys were failing after
14 years of fighting. Due to the genetic component of his disease, none of his family could be
considered as candidates for donation. Jackson was running out of time. As a mom of three young
sons, I can’t imagine the heartache of being completely dependent on another person to save my son’s
life. As a neighbor, I can’t imagine wishing the very best for another family but being unwilling to try to
help. So, in February 2019, I started testing to be a living kidney donor for Jackson. I was confirmed as a
match in April 2019.

During the testing process, prospective donors are provided with an overload of documents about the
risks of the procedure. Most of the risks are expected health risks. I work in healthcare IT, so I
understood the health risks as reasonable and minimal. However, there are also short-term and long-
term risks for health insurance, disability insurance, life insurance, and missed wages for the recovery
time from an elective surgery. These are the risks that I wasn’t expecting. Specifically, “living donation
may have a negative impact on the ability to obtain, maintain, or afford health, disability, and life
insurance.” In addition to the warning of future impacts to health, disability and life insurance, the
documents included the existing legislation to protect donors in each state for lost wages and donation
related expenses. Under current Kentucky law, there are no protections for living donors.

There are more than 94,000 people nationwide waiting on a kidney transplant. While waiting for a
donor, those on dialysis are together spending $42 billion dollars a year for this treatment. I anticipate
the financial impact to Medicare and Kentucky Medicaid for long term dialysis is significant. By adding
protections for living donors that help ease the immediate financial strain of living organ donation and
by banning long-term discrimination for health, disability and life insurance, Kentucky not only has an
opportunity to save additional lives of Kentuckians through increased participation, but also to increase
healthcare savings. There are already existing bills in several states that can be used as a blueprint for
Kentucky to offer a deduction of $10,000 on state income taxes for travel, lodging, and lost wages
related to living organ donation. In addition, there are bills and acts that exist in other states that
provide income tax credits for employers willing to pay the wages of employees on organ donation
leave, paid leave for state employees and even one requiring paid leave for private employees. There is
also currently a proposal in the U.S. House of Representatives HR 1224 to protect living donors from
health, disability and life insurance discrimination.
I am asking you to review Arkansas HB 1393 (2003), Florida HB 1410 (2004), Iowa HF 801 (2005),
Mississippi HB 1512 (2006), New Mexico HB 105 (2005), North Dakota HB 1474 (2005), Oklahoma SB 806
(2007), Utah SB 164 (2005), Wisconsin AB 477 (2004) in addition to laws in Idaho, Louisiana, Ohio, and
Virginia that allow living donors to deduct as much as $10,000 on their state income taxes for travel,
lodging, and lost wages related to donation. Please also review Arkansas Act 2235 (2005) which
provides an income tax credit for employers electing to pay the wages of employees on organ donation
leave.

I am asking you to also review Idaho HB 1318 (2005) which authorizes state, city and county employees
to use up to 30 days of paid leave each calendar year to serve as an organ donor and Ohio HB 326 (2001)
which adds 7 days of paid leave per year to state employees to serve as a bone marrow donor. Please
also review California SB 1304 (2010) which requires private employers to offer paid leaves of absence
similar to those offered to state employees for organ donation. I realize this would put a financial strain
on small businesses, but that strain would be lifted if a bill similar to Arkansas Act 2235 (2005) is enacted
to provide a tax credit to the employer for the employee’s wages during time off for organ donation.

When I notified my employer about my donation surgery, the short term disability management
company contracted to handle employee time off informed me that living organ donation was an
elective surgery, and that any time off outside of my yearly vacation time allotment was not covered by
my salary. Under company policy, it was as if I was having cosmetic surgery that just happened to save
another person’s life. I was allowed to take off under unpaid FMLA which guaranteed my job security
but meant that my family would miss a paycheck or more. The only time in the donation process that I
began to feel overwhelmingly stressed was thinking of the impact to my husband and kids for my lost
salary if my recovery took longer than the four ‘vacation’ days I scheduled to be off. Luckily, I was able
to return to work six days after surgery; the suggested time off is four to six weeks. I am in a blessed
position where I work remotely, and I had four vacation days stored to take time off. I didn’t have to
choose between my family’s finances and saving a life. Not everyone is so lucky.

Prospective living donors currently have to be willing to not only go through surgery and recovery, but
they must also take on the financial impact for lost wages and the emotional toll of knowing their long
term health, disability and life insurance is not guaranteed. These are the concerns for prospective
living donors while they balance a decision that means life or death for another individual. These are all
concerns that deter donors but that can be alleviated with your help and changes to legislation in
Kentucky. Please add individual legislation for each of the following: up to $10,000 in individual tax
deductions for expenses related to living organ donation, up to 30 days paid time off per year for state
employees that donate an organ in addition to their existing paid time off, up to 7 days paid time off per
year for state employees that donate bone marrow in addition to their existing paid time off, a tax credit
to employers equivalent to the 30 day salary of an employee that donates an organ if the employer
grants 30 days of paid time off in addition to their employee’s existing paid time off, and a bill stating
that organ donation is not a pre-existing condition that can be used to deny or charge more when
obtaining life insurance, disability insurance and health insurance.

Respectfully,

Kelly “Beth” Burbridge