Shared from the 7/7/2021 San Antonio Express eEdition

Give organ donors federal protections

Picture

I have lost five family members to polycystic kidney disease — a chronic, genetic condition that causes uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure.

PKD affects more than 600,000 Americans and millions around the world, with over 53,000 patients estimated here in Texas. While there is currently no cure for this terrible disease, the best course of treatment for those of us affected is a kidney transplant.

A kidney transplant is a lifesaving gift from one person to another. I wouldn’t be alive today if a co-worker from UT Health San Antonio hadn’t come forward to donate a kidney in 2005. Other members of my family have also benefited from the gift of organ donation, including my brother, who received his gift of life in 2003 from our cousin; and my sister who received a kidney from a generous donor in April, just four months after starting dialysis. While my family’s story is tragic, due to the genetic nature of this disease, it is just one example of how PKD affects families across the country.

The PKD community relies on the courage and selflessness of living and deceased organ donors — yet donors often face employment hurdles and life insurance discrimination. Congress — particularly Texas senators and representatives — should support commonsense legislation to remove the barriers that donors encounter and expand access to living organ donation.

The Living Donor Protection Act, or LDPA, a bipartisan bill sitting in Congress and waiting for consideration, would prohibit discrimination in insurance practices based on an individual’s status as a living organ donor. This includes any condition of a policy for life insurance, disability insurance or long-term care insurance.

Additionally, the LDPA designates recovery from organ-donation surgery as a serious health condition. This entitles covered private-sector and federal employees to much-needed medical leave. With the passage of this legislation, living organ donors may use time granted through the Family and Medical Leave Act to recover.

The LDPA also requires the Department of Health and Human Services to conduct public awareness campaigns that educate Americans on the benefits of living organ donation and the changes in insurance that would arise from this new law. These campaigns will ensure existing donors are aware of their rights to access necessary insurance without fear of exorbitant premiums or denied coverage.

Though Gov. Greg Abbott signed a state-level Living Donor Protection Act this year, as of the drafting of this piece, neither of Texas’ U.S. senators, Ted Cruz and John Cornyn, nor any Texas member of the U.S. House of Representatives has co-sponsored the federal Living Donor Protection Act during this Congress. Please reach out to your elected officials and ask them to pass this lifesaving legislation.

My family and many others have benefited from the gift of life that selfless donors have provided, allowing us a second chance. It has allowed me to travel internationally, participate in family celebrations and hardships, and continue to work with tireless volunteers to raise awareness for PKD and organ donation.

It is my turn to help recognize all living organ donors by supporting the Living Donor Protection Act

I passionately believe that the Living Donor Protection Act will motivate more people to give the gift of life. Such an act will ensure a better future for donors and recipients — allowing me to grow old, along with my donor, and providing a better future for all living with PKD.

Patti O’Grady Ruffin is a PKD advocate in San Antonio and volunteer coordinator with the San Antonio Walk for PKD.

See this article in the e-Edition Here
Edit Privacy