Friday, March 4, 2022

The non-cookie-cutter vax patient’s journey

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Mar 04, 2022 View in browser
 
POLITICO Nightly logo

By Joanne Kenen

With help from Renuka Rayasam

A health worker prepares a dose of the AstraZeneca Covid-19 booster vaccine.

Ulet Ifansasti/Getty Images

SHOT IN THE DARK — The CDC called me the other day. It was about time.

Actually, it was a year too late.

A year earlier — 11 months, to be more precise — I got my first coronavirus vaccine, a Pfizer mRNA shot administered in a pharmacy in a suburban Maryland supermarket, outside D.C. I had unusual and disturbing side effects, some of which were similar though not identical to my bee sting allergy. My doctors (and I consulted a bunch of them) were not quite sure what was going on but I had a searing headache, numbness in my lips and mouth, spikes in my heart rate, and a bunch of Other Weird Stuff, some of which persisted, though more mildly, for several months.

As I wrote in POLITICO Magazine last May, it sent me on a challenging odyssey to figure out how I could get safely fully vaccinated, which I finally did with a Johnson & Johnson shot and later with a J&J booster. After that piece came out, I heard from many readers who also had side effects and reactions, who also were determined to get fully vaccinated, and were also having a terrible time getting information.

As knowledgeable as I am about our health care system after all my years as a health journalist, as much contact as I have with experts on the pandemic, I struggled mightily to get information about what to do after that first shot. How and where to get my second shot. What my options were for a booster. Where to find data on how one Pfizer and two J&J shots given over nine months protected me against Delta, and then Omicron. I still worry about what to do if we need more boosters or new variant-focused shots. How available will J&J still be? Will Novavax, or the Sanofi-GSK shots, if they get FDA authorization, be safe or better for me?

Last March, I dutifully signed up for email surveys the CDC was sending out to the newly vaccinated, answering questions about side effects and symptoms and asking questions I could squeeze in. If I'm remembering right, they first came daily, then weekly, then a few later follow-ups. Those surveys said the CDC would reach out to some people. I asked again and again for them to reach out to me — sometimes resorting to ALL CAPS PLEAS FOR HELP GETTING MY SECOND SHOT. I reported my experience to VAERS, the government's Vaccine Adverse Event Reporting System. I notified the Pfizer adverse event system.

Except for a conversation with the Pfizer PR department for the magazine piece, I never identified myself as a reporter, only as a patient with a problem.

I never heard back. Not from the CDC. Not from VAERS. Not from Pfizer. Not even after my magazine article appeared.

Then one recent weekend morning, I saw a phone message from the CDC. After a few days of telephone tag, I spoke to a real person. She was a very nice lady, a good listener whose job appeared to be — oh so belatedly — to check in with people who had vaccine problems. But when I explained my ongoing concerns — she had no answers and scant guidance.

Mostly she told me to check the CDC website. Not exactly the illumination I was hoping for after 11 months.

Last year, I wrote that the CDC failed to address the challenges of non-cookie-cutter patients. And it matters. Vaccination remains important, and addressing the needs of people who had bad experiences matters. I persevered. I got all my shots. If it's necessary, I'll get the next one too. But not all the readers I heard from — not "anti-vaxxers" but people who like me had genuine and valid questions — did so.

And that increases the risk — to them, and to all of us.

Welcome to POLITICO Nightly. Reach out with news, tips and ideas at nightly@politico.com. Or contact tonight's author on Twitter at @JoanneKenen.

 

HAPPENING TUESDAY, INTERNATIONAL WOMEN'S DAY, AN IMPORTANT CONVERSATION ON THE WOMEN IN AFGHANISTAN: Join Women Rule editor Elizabeth Ralph for a panel discussion on the future for Afghan women. Guests include Hawa Haidari, a member of the Female Tactical Platoon; Cindy McCain, U.S. ambassador to the United Nations Agencies for Food and Agriculture; Roya Rahmani, Afghanistan's first female ambassador to the U.S.; and Sen. Jeanne Shaheen (D-N.H.). Learn how female Afghan veterans are planning their futures, what the women still in Afghanistan face, and what the U.S. can do to help. REGISTER HERE.

 
 
What'd I Miss?

— Russia bans Facebook: Russian authorities blocked access to Facebook today, claiming the world's largest social media company had broken the country's rules by limiting online access to state-backed media . The decision, by Russia's media and telecoms regulator, is the latest move in a quickly escalating standoff between Western tech companies and the Kremlin.

— U.S. finance firms urged to sever ties with Russian oil: Pressure is building on U.S. financial firms to respond to Russia's invasion of Ukraine by ditching their investments in both Russia and its fossil fuel sector . BP PLC, Shell PLC and a growing list of other international companies moved this week to drop their Russian investments amid widespread sanctions on Moscow from the United States, Europe and other countries. Now, environmentalists want Western finance firms to do the same. They say major investment banks with stakes in Russia and its largest emitters should follow suit to further squeeze Russian President Vladimir Putin and his nation's economy. Doing so, they add, also can help the firms mitigate financial risk.

Ground personnel unload weapons and other military hardware delivered by the U.S. military near Kyiv, Ukraine, on Jan. 25, 2022.

Ground personnel unload weapons and other military hardware delivered by the U.S. military near Kyiv, Ukraine, on Jan. 25, 2022. | Sean Gallup/Getty Images

— How the U.S. and British are funneling weapons to kill Russians: The floodgates of military aid for Ukraine appeared to burst open this week as European countries lined up to announce the delivery of tens of thousands of rockets aimed at striking Russian tanks and helicopters, along with other critical supplies. Western officials insist that the shipments aren't too late to influence the fight against the 150,000-plus Russian troops pushing toward Kyiv and other major cities, though the routes to get the weapons into the country are few, and increasingly perilous.

— Adams to lift NYC school mask mandate, vaccine requirement for indoor venues: Mayor Eric Adams will remove the mask mandate for public schools and waive the proof of vaccination requirement for restaurants and entertainment venues starting Monday , saying the city is finally moving past Covid-19 restrictions that have hampered its economy since the pandemic started two years ago. "This is clearly an Arnold Schwarzenegger moment, 'We'll be back,'" Adams said at the Times Square press conference this morning.

— White House endorses cyber incident reporting bill that DOJ criticized: The White House has come out in support of a cyber incident reporting bill that senior Justice Department officials warned this week would make the U.S. less safe . The legislation, which the Senate passed as part of a wider cybersecurity bill on Tuesday, has also drawn endorsements from National Cyber Director Chris Inglis and Jen Easterly, the director of DHS' Cybersecurity and Infrastructure Security Agency. The bill would require a wide range of companies responsible for U.S. critical infrastructure to report cybersecurity incidents to the government to CISA.

 

DON'T MISS POLITICO'S INAUGURAL HEALTH CARE SUMMIT ON 3/31: Join POLITICO for a discussion with health care providers, policymakers, federal regulators, patient representatives, and industry leaders to better understand the latest policy and industry solutions in place as we enter year three of the pandemic. Panelists will discuss the latest proposals to overcome long-standing health care challenges in the U.S., such as expanding access to care, affordability, and prescription drug prices. REGISTER HERE.

 
 
PUNCHLINES

DRAWING PUTIN — It is a challenge for cartoonists to draw figures in any hot war, trying to balance caricature with the destructive nature of events. In the latest Punchlines , Matt Wuerker takes us through artists' efforts to grapple with the Russian leader and the ongoing invasion of Ukraine.

Cartoonist Matt Wuerker draws Russian President Vladimir Putin

Nightly Number

10,000

The number of new full-time workers the IRS plans to hire to play a direct role in helping the agency reduce its backlog of millions of unprocessed tax returns and other mail from individual and business taxpayers, according to the leader of the union that represents most of the IRS workforce.

Parting Words

FROM BORDER TO CLUB — On the morning of her planned flight from Kyiv to Turin on Feb. 24, Anastasia Topolskaia's daughter woke her up at 5:30 a.m. Her ex-husband had called to explain that war had started. They needed to leave sooner. Within 40 minutes, Topolskaia, who is better known on the global club circuit as DJ Nastia, her daughter and a Greek friend started driving west.

Her husband, a former member of the Ukrainian Parliament who made enemies with the Trump administration, stayed behind.

This morning, Topolskaia woke up in Austin, Texas, where she will kick off a club tour that will take her around the U.S. and to Toronto to help raise money for the Freedom for Ukraine fund. Nightly's Renuka Rayasam spoke with Topolskaia this morning about her journey, her tour and her politics. This conversation has been edited.

Tell me about your journey out of Ukraine.

We were going to Lviv, and then when we got closer, we decided to go to the border. The nearest one was Poland. I was driving for 12 hours, and then we saw a huge queue. We spent five hours in the queue to get to the border. And it was quite fast to go through. But then we got stuck in the buffer zone between the Ukrainian and Polish border for five more hours. It was exactly 24 hours from the start of the trip to the hotel in Poland. It was insane. I was very lucky to be one of the first ones, actually.

I cannot go back to Ukraine. It's impossible. I will be based in Amsterdam until everything is finished.

Your husband, Sergei Leshchenko, turned up a notebook that allegedly detailed payments that Paul Manafort, Trump's former campaign manager, got from the former pro-Russian Ukrainian president. This cost him a job in the current government . What is he doing now?

He's not in Zelenskyy's team officially, but he is with him, of course. He is now a supervisory member of the Ukrainian railway. He's staying in Kyiv with all of the government, doing what he can do for other people. He's sleeping in a bunker. I've been asking his help to get train tickets for my friends.

You faced criticism by Ukranian activists for playing at a "sex positive" club in Moscow last year when tensions were high between the two countries. Can you tell me why you did that?

The club, which invited me there, is kind of like my family. I have many friends living there who are struggling as well. I support the LGBTQ+ movement in Moscow, which is not safe. This club struggled because local governments shut down their events. It's very dangerous. Everyone understands what's going on, who Putin is and the politics of Russia. Not all of the Russian people support Putin.

How do you feel about this current tour?

I cannot get stuck in front of the laptop screen and watch the news and do nothing. I need to work and this is what I'm doing right now.

But I'm struggling to imagine myself playing in the club tonight, because my profession is created to entertain people. It's all about music and making people feel good, but I don't feel good. I cannot just stand there pretending that it's fun, and I feel good or smile and stuff like that.

I was touring Japan when Russia was occupying Crimea in March 2014. I cried for three days in a row in a hotel in Tokyo. When I came to the club, I said to the guys, "Honestly, when I come back to Ukraine, I will be a partisan. I will go to fight for Ukraine." When I was playing, it was the only time in my life when the music just stopped playing in the club. I was so lost and confused I was searching for the next track.

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