Nielsen’s Input on ACA Recognized in Obama Presidency Oral History

Now her work — and that of many others — on the Affordable Care Act, from advocacy to implementation, has been documented for posterity in the Obama Presidency Oral History.

Nielsen, senior associate dean for health policy in the Jacobs School of Medicine and Biomedical Sciences, is one of the “extraordinary people from all walks of life” invited to participate in the Obama Presidency Oral History project. Compiled by Columbia University, the history is based on more than 1,000 hours of interviews with hundreds of people.

Just being invited to do the interview was an incredible honor, Nielsen says. It also gave her a chance to review how she came to take part in one of the most significant health care reforms the U.S. has ever seen.

In 1973, with a doctoral degree in microbiology and a faculty position at the Jacobs School, Nielsen was accepted to the UB medical school. She was a “nontraditional” student, since she already had a faculty position and was also raising five small children. She was one of just 30 women in her class of 135.

After graduating and serving as the first woman chief resident in internal medicine at Buffalo General, Nielsen was board-certified as an internist. In addition to running a busy private practice, she was drawn to the policy side of medicine. She served as president of the Erie County Medical Society, became involved with the state medical society and started working at the national level.

She served four consecutive terms as speaker of the American Medical Association House of Delegates and in 2008 was elected AMA president, a term that coincided with the intensifying national health care debate.

While Nielsen was president-elect, the AMA launched its Voice for the Uninsured campaign, advocating for health care reforms that would extend health insurance coverage to Americans who didn’t have it.

In preparing for the campaign, the AMA media relations staff asked if Nielsen had any patients who were uninsured.

That’s when Nielsen revealed she had also been uninsured. “During graduate school, I delivered two babies when I was uninsured,” she says, “and that became the cause of my life: to make sure all Americans got health insurance.”

She recalls that at the time the Affordable Care Act was passed, 19% of the U.S. population had no health insurance.

“It really was a national scandal, to tell you the truth, and there were places where it was even worse than that,” she says. “There is nothing good about being uninsured. That was the whole point of the Voice for the Uninsured. They didn’t have a voice. So we became that voice.”

Once implemented, the Affordable Care Act cut the uninsured rate in the U.S. to 9% from 19%. It would have cut it even more, Nielsen explains, but the Supreme Court intervened and said the expansion of Medicaid, which was supposed to insure millions, was a state’s rights issue.

Since then, more states have come on board. Nielsen says it’s now down to about 10 states that haven’t expanded Medicaid, about half of which are considering it or are about to expand.

A few months after Nielsen finished her term as immediate past president of the AMA, she got a call from the White House. She was asked to come work at the newly established Center for Innovation in the Center for Medicare and Medicaid Services in the Department of Health and Human Services.

“It was a brand-new part of HHS, and they said they needed me to come to bring the physician voice, as they were implementing this new part of the government,” Nielsen says.  

As senior adviser for stakeholder engagement, she would be “on loan” from UB to the federal government, a stint that would last two years. Her role was to interact with, and share the concerns of, clinicians throughout the health care system.

“The Innovation Center is unique in government,” Nielsen notes. “It was enshrined in the ACA law, so that instead of making a big policy change and then having unintended consequences, the Innovation Center would do pilots and actually evaluate whether the care was improved and whether there were savings. That was the purpose. There was no place else in government where there was the flexibility to try something to see if it worked.”

She assumed additional responsibilities working with HHS Secretary Kathleen Sebelius, advising on policy and sometimes attending events when the secretary could not.

“It was just an extraordinarily exciting time and I loved it,” Nielsen remembers.

She admits that working in Washington was “seductive,” but she always intended to return to UB.

“I owe my career to UB,” she says simply. “I always wanted to be a physician. I didn’t have money. After my fifth child was born, I finally applied. I was 29 when I started medical school and my fifth child was 2 months old. 

“So UB gave me a chance. I was lucky that the admissions committee let me in, and I will never forget it. My whole career has been here and I’ve just been very fortunate. I owe it all to UB.”

Now she’s passing her passion for policy on to the next generation of physicians. Nielsen was recently asked to be faculty adviser to a group of Jacobs School students who want to develop a policy elective. 

“Why is policy important?” she asks. “Policy is the road map that we use to get to the society we want. For me, it meant getting affordable health insurance for every American. I tell the students, ‘Your cause will be different.’ My role here is to help the students change the world, whatever that means to them.”