Health nonprofits speak out

WASHINGTON, DC, USA, February 20, 2023 /EINPresswire.com/ -- Amazon announced on January 27 that it was ending its AmazonSmile program today. The program has been an effortless way for Amazon shoppers to donate to the nonprofit of their choice, and for small nonprofits to receive much-needed funds. Amazon wrote, “...after almost a decade, the program has not grown to create the impact that we had originally hoped. With so many eligible organizations—more than 1 million globally—our ability to have an impact was often spread too thin.”

Dozens of nonprofits dedicated to supporting people living with a variety of diseases came together to send Amazon a letter last week, facilitated by Genetic Alliance. In the letter, they detailed reasons that this thinking is flawed. First and foremost, Amazon has never measured the impact of the program. Another issue is the fact that these nonprofits have driven their members to shop on Amazon and effectively recruited for the giant retailer. Among other important reasons, those who cannot afford to donate can buy the essentials and have a portion of that go to the charity that supports them. The program enabled these folks to contribute and allowed a much more inclusive donor base to be formed without harm to individuals who are not only struggling with the health of a loved one but also to make ends meet.

The response to the letter, which is available here, was almost immediate. In less than an hour, Amazon responded with the same phrases as were in the original letter. The health advocacy organizations have asked Amazon to read the letter and respond. In the letter, leaders of these groups described the impact of these donations.

"We were able to send 20 memorial gifts to families who lost a baby to generalized arterial calcification of infancy (GACI) with the money we received from AmazonSmile", said Liz Molloy, the co-President of GACI Global.

Kathy Stagni the Executive Director of the Organic Acidemia Association explained, "OAA used these funds to reimburse postage for donating special formulas to families living in other countries. This special formula is not available in countries like Guatemala. This formula is the sole nutrition for many children with our rare metabolic conditions."

And from another of the dozens of leaders who contributed their impact statements to the letter, "The families we support are medically and financially fragile; the clinicians we connect with have extremely high caseloads and use their personal time to support our mutual work; the researchers we connect with stretch out whatever funds they can garner to bring their findings to peer-review. Every. Little. Bit. Helps. AmazonSmile has been instrumental in providing our constituents a way that is meaningful without breaking their banks, in two ways: being a convenient resource for quotidian shopping, and donating to causes like ours", described Lisa Schoyer, President of the RASopathies Network.

In the process of collecting the impact statements, Genetic Alliance CEO, Sharon Terry, said she was in tears. "Since 1986 we have worked with these grassroots advocacy organizations, I am always moved when we get to the core of what they, of what we, do. These seemingly small actions - helping families with things that are essential, in the midst of all their suffering - are powerful. Together we are an army supporting families, educating clinicians, and catalyzing research. We have no support except from our members. It pains me to see AmazonSmile end, and to realize how alone we are in moving the needle in genetic disease research and services. I am grateful we have each other." Terry is also the co-founder and CEO of PXE International, serving pseudoxanthoma elasticum, a disease her two children were diagnosed in 1994. The AmazonSmile program was important to their successes over the years.

Those who buy products on Amazon have apparently not been informed of this change. It remains to be seen whether Amazon will respond with anything more than a recapitulation of its form letter to nonprofits.

Sharon Terry
Genetic Alliance
+1 202-966-5557
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