First Lady Pool Reports of September 14, 2020

Flotus pool report #1

Flotus entered the State Dining Room at 1:02 pm to begin her event on sickle cell disease.

Admiral Giroir and about 20 participants are here.

Live stream link: https://www.youtube.com/watch?v=3CLd8rZhQPE&feature=youtu.be

Details and words TK.

Flotus pool 2

Flotus spoke about sickle cell in her remarks, and did a few ad libs so far.

"Although we have known about this disease for over one hundred years, too many Americans living with Sickle Cell still do not receive the quality care they need and deserve," she said.

"But together, we can bring help and hope to so many children and families. Children's well-being is a primary focus of my Be Best initiative. Unfortunately, the effects of Sickle Cell Disease often begin in early childhood, and can cause episodes of extraordinary pain that put patients at risk for organ damage or stroke."

Samuel Price, a school aged boy seated to her right, was described as the "star of the show" by Admiral Giroir, who is serving as emcee.

Price said when he learned he had sickle cell "I said I'm going to find a way out." He said he discovered chess and "I don't think about pain any more."

That prompted flotus to say "Good job. Very strong. Keep it up."

At one point Shamonica Wiggins, a patient advocate, talked about having "an invisible illness." She told Flotus "I would love it if you would become an ally" for fighting the disease.

That prompted flotus to thank her and say "that's why we are here today, to help children and adults."

Event wrapping more TK.

Flotus pool report 3 -- more quotes, list of participants, no response to question

?The event wrapped about 1:50 pm.

Flotus did not respond to a shouted question from your pooler about whether she was up for a third term that the president discussed this weekend.

A total of four out of about 16 participants seated at a cloth covered table for the event wore masks. FLOTUS and the rest did not. FLOTUS wore a pearl covered dress. FLOTUS was seated beneath the famed Lincoln portrait.

List of participants at the bottom.

Samuel Price, quoted in pool report 2, is 12 years old.

He says during a first bout of illness, he missed Christmas and was hospitalized. "But I still got presents," he quipped.

The full quote from Shamonica Wiggins directed at the first lady was: "I would love it if you could become our ally and make this cause your cause as well. Because as one who hates bullying, stick up for us who are often bullied by the health care system."

At that point, FLOTUS activated her mic and said: "Thank you very much for your story and for your strength. That's why we are here today. So we could help children and adults and thank you so much. We are here all of us, doctors, advocates, so we are working on that."

She talked about having Admiral Giroir be part of her care network since third grade. Giroir called her "almost a member of my family," and bantered with her before the start of the event.

Wiggins told a story of seeking treatment and being told: "I don't think you're in pain. I think you just want pain medication."

She said people with the disease are also victims of the opioid crisis, and that once people diagnosed with the disease as children become adults, "we're kind of forgotten about."

Andrew Campbell, who runs the sickle cell program at Children's National, said the disease affects about 100,000.

Former NFL player Jack Brewer also spoke, after his son spoke about helping overcome sickle cell through music.

"I played professional football" with the best doctors in the world.

‘No one ever gave me the answer to why every time I over-heated I broke out" into intense cramps. He said he was the only one who needed 2 quarts of IV fluid after a game.

"First lady, the way that you stand up for the rights of children and the way this administration has continued – continued – to put on the forefront the issues affecting black people," he said, raising his voice. "Why did it take from '83 until now for someone to start being their voice?"

Brewer asked for a prayer at the end of the event.

Ashley Valentine, spoke in broad terms about the disease, which disproportionately affects minorities.

"Our community is suffering," she said. "This is historic to be speaking to officials at this level," she continued, removing her mask for her remarks. She talked about losing her brother to the disease at 36.

There was some talk of disease modifying therapies.

Kayla Smith-Owen, 21, spoke about the challenge of patients suffering without visible effect.

"No one in this room that has Sickle Cell looks as sick as they are," she said. She said she is in the hospital almost every month.

FLOTUS spoke again at the bottom of the program. Here's a quote: "As we continue to observe National Sickle Cell Disease Awareness Month, I want to recognize the bravery of those living with this disease, especially children. You deserve a long and happy life, free from pain, and we will continue to fight until nothing stands between you and your dreams. And we offer our gratitude and our support to the families, caregivers, and advocates who provide comfort and care, even when their own hearts are breaking. While we use this month to raise awareness about the fight against Sickle Cell Disease, the work will continue after September has ended – for as long as it takes to find a cure."

And here's a list of additional participants:

Emma Doyle, Assistant to the President and Deputy Chief of Staff for Policy to the First Lady
Brooke Rollins, Assistant to the President and Director White House Domestic Policy Council
Ja'Ron Smith, Deputy Assistant to the President for Domestic Policy, Domestic Policy Council

ADM Brett Giroir, MD, Assistant Secretary for Health, HHS
Gary Gibbons, MD, Director National Heart, Lung, and Blood Institute
RADM Felicia Collins, MD, MPH, Deputy Assistant Secretary for Minority Health, Director Office of Minority Health, HHS

Kayla Smith-Owens, 21 y/o, Patient at Children's National Hospital
Michelle Smith, Mother of Patient at Children's National Hospital
Samuel?Price, 12 y/o, Patient at Children's National Hospital
Annette Price, Mother of Patient at Children's National Hospital
Shamonica Wiggins, 30 y/o, Patient and Advocate
Jack Brewer, Parent Advocate
Jared Brewer, 22 y/o, Patient and Jack's son

Andrew Campbell, MD – Director, Comprehensive SCD Program, Children's National
Ashley Valentine – President and CEO, Sick Cells