For more than 40 years I have been a health policy advocate, pushing for ACP’s policies
to put patients first. This summer and fall, I spent over 40 days in the hospital,
including 30 days in the ICU, as I was treated for numerous and life-threatening complications
from a ruptured appendix. What did I learn as a patient about health care policy,
and ACP advocacy?

Allow me to start with the good news. I am doing very well now and have resumed working
for ACP as Senior Vice President Emeritus for Governmental Affairs and Public Policy.
Others I know who work in health policy and advocacy have reported how awful the system
was when they became a patient. This is not my story. I am forever grateful to the
physicians, nurses, aides, and physical and occupational therapists who kept me alive
and restored my health; the health care system worked well for me.

But my experience also made me more aware, in a way that researching and writing about
health policy can never do, that although my care experience was mostly positive,
this is not the case for millions.

Affordability

My care for the most part was affordable, not so for many Americans.

I am fortunate that I have exceptionally good health insurance through ACP and Medicare
Part A. My insurance is a national Blue Cross/Blue Shield Preferred Provider Organization
(PPO) model with Medicare Part A as a secondary payer, accepted by almost all physicians,
hospitals, and health care systems, including Johns Hopkins and its Sibley Memorial
Hospital in Washington, D.C., where I received my care. While my bills are more than
$600,000 and counting, out-of-pocket costs have been modest. I did get a surprise
$3,000 bill for anesthesia services, of which my insurance paid about $700. The terms
of the contract with the anesthesiologist did not allow them to collect more from
me. I was required to spend considerable time working it all out.

My story is not shared by the millions of Americans without health insurance, or those
who have plans with high deductibles and co-pays and/or narrow HMO networks of physicians
and hospitals. They’re at elevated risk of bankruptcy. They have been vulnerable to
surprise bills for out-of-network care because of insurers that do not pay a fair
rate and out-of-network physicians and hospitals that aggressively seek payment. The
new No Surprises Act that went into effect in January may help, although its implementation is tilted toward
insurers over physicians and hospitals when there is a dispute over the allowed payment.

I was fortunate that ACP offers its employees paid family and medical leave for qualifying
events while most employers do not.

ACP has rightly championed universal coverage for all Americans, giving everyone access
to public health insurance; limits on or elimination of high deductibles and co-pays
for high-value care, especially for low-income persons and those with chronic illnesses;
better network adequacy standards; and limits on surprise billing with a fair process
for resolving disputes between the insurer and the billing clinician. (You can learn
more about ACP’s coverage recommendations from our 2020 position paper on coverage and cost, published Jan. 21, 2020, by Annals of Internal Medicine). The stalled Build Back Better bill had provisions supported by ACP to close the
coverage gap in Medicaid nonexpansion states, supply paid family and medical leave,
and lower cost sharing under the Affordable Care Act.

No one who is sick, as I was, should be faced with unaffordable health care and no
choice but to take unpaid family and medical leave or lose their jobs. Other countries
have achieved universal coverage with lower administrative spending and paid family
and medical leave; why not us?

Health equity for undervalued support workers

Health care relies on people of color whose services are grossly undervalued. The
people who cared for me on a daily basis were not physicians but nurses, aides, housekeepers,
and physical and occupational therapists. I would say that 98% of them were people
of color, with the overwhelming majority being Black women. They were compassionate
and committed even as I heard some of them express frustration related to labor shortages
that sometimes delayed our care.

Public policy involving physicians and nurses usually is about the perennial fight
over scope of practice. Yet as important as physicians are—my surgeon supported
by a team of physicians in infectious disease, nephrology, cardiology, emergency medicine,
pulmonology, gastroenterology, anesthesiology, and radiology are the ones who kept
me alive and restored most of my health—the importance of nurses and other
nonphysician staff also was critical.

Advocacy for health equity and diversity, equity, and inclusion (DEI) is rightly a
priority of the medical profession and ACP. Yet shouldn’t this advocacy and public
policy prioritize the working conditions and wages for Black women and other persons
of color who deliver the daily care we patients depend on? Shouldn’t hospitals and
insurers do more to support them? Shouldn’t Congress?

Access to care

I was able to get an ICU bed, yet many others can’t. Having access to the ICU likely
kept me alive. This was largely before the delta and omicron variants of COVID-19
swept the country and made ICU beds and care teams unavailable for many people with
other conditions. Perhaps it is likely I would have been admitted anyway. Yet the
unwillingness of many to be vaccinated, the striking of the employer vaccine mandate
rule by the Supreme Court, the actions by some states to prohibit vaccine and masking
requirements, and the disinformation and misinformation spread by some politicians
and talking heads and on social media are creating a shortage of ICU beds and care,
a growing sense of frustration and dismay among physicians and nurses, and likely
more deaths. ACP advocacy for vaccine requirements, for no-cost testing, and for a
science-based approach to COVID-19 is more important than ever.

As the Rolling Stones’ Keith Richards says, I am glad to be here; I am glad to be
anywhere. My 40-plus days of hospitalization gave me perspectives unlearned during
40-plus years of health policy advocacy. I was fortunate for so many reasons. I am
also acutely aware that this is not the case for millions of people. This must not
be allowed to be viewed as acceptable.