President Donald Trump gathers with Congressional Republicans in the Rose Garden of the White House on May 4. Photo by Carlos Barria/Reuters

#IamAPreexistingCondition


So it turns out that not even late-night TV host Jimmy Kimmel’s emotionally wrenching story about his newborn baby’s heart defect and subsequent life-saving surgery was enough to persuade three more GOP House members to vote against the latest version of the American Health Care Act (AHCA). Kimmel’s baby, like millions of other Americans, now has a “pre-existing condition” that insurers traditionally have treated almost as a badge of shame, and subject to increasingly high insurance premiums and deductibles.

That’s because the AHCA, as it presently stands, will allow states to apply for a waiver to the Obamacare requirement that insurers must charge all people the same rates, no matter their medical histories. Removing that requirement means that insurers will be able to charge exorbitant premiums if you have a pre-existing condition and have let your insurance lapse, which, in practical terms, can lead to financial ruin in trying to keep purchasing insurance coverage.

The “big 10” of patient advocacy groups, including the American Cancer Society Cancer Action Network, American Diabetes Association and American Heart Association, came together to oppose AHCA, saying in a joint release, “Weakening protections in favor of high-risk pools would also undermine the ban on discrimination based on health status. The individuals and families we represent cannot go back to a time when people with pre-existing conditions could be denied coverage or forced to choose between purchasing basic necessities and affording their health care coverage.”

The last-minute GOP solution to address the issue of people with pre-existing conditions was to add in $8 billion more for patient “high-risk pools,” which were used by 35 states before Obamacare and often came with high premiums, high deductibles and sometimes capped enrollment. A just-released independent analysis from the health consultancy firm Avalere Health showed that the $23 billion earmarked by the bill for those pools would cover only 110,000 Americans, a mere 5 percent of the 2.2 million enrollees in the individual insurance market today with some type of pre-existing chronic condition.

With such a large gap between the available funding and the number of impacted Americans (that will only grow as our population ages), it means that if one of the larger states receives a waiver, there will be even less money to go around. As the summary of the Avalere Health study states: “For example, Texas alone has approximately 190,000 enrollees in its individual market with pre-existing chronic conditions, nearly 80,000 more people than the funds earmarked for the entire country would cover. Florida has 205,000, nearly 95,000 more than the funds allotted nationally amounts would cover.”

What exactly are these pre-existing conditions? Sen. Sherrod Brown (D-Ohio) took to Twitter to list many of them, from AIDS/HIV, acid reflux, acne, ADD, addiction, Alzheimer’s/dementia, anemia, aneurysm and angioplasty to skin cancer, sleep apnea, stent, stroke, thyroid issues, tooth disease, tuberculosis and ulcers. In the hours after the House vote, the No. 1 trending hashtag on Twitter was #IAmAPreexistingCondition, with individuals listing their diagnosed conditions, such as TashiLynnCA writing, “In 2010 my 10 year old brother was diagnosed with stage III Hodgkin’s Lymphoma. This is for him.” Older adults and veterans also shared. “‘I’m a disabled veteran that suffers from PTSD” tweeted RedTRacoon.

Friends of mine on Facebook are sharing that some doctors already are getting calls from worried patients, asking that their diagnoses be expunged from their medical records because they are fearful of having a paper trail documenting their conditions. People will be scared to go to emergency rooms, afraid that they will be identified as having one or more conditions on the list.

For the 20 percent of Americans who have some type of disability covered under the Americans With Disabilities Act of 1990 (ADA), this potential change in how much people with pre-existing conditions can be charged for health insurance hits hard. @LCarterLong from Washington, D.C., wrote, “Born three months premature. Weighed 2 lbs. Alive b/c of an incubator. Have cerebral palsy. Use orthotics to walk.” Alice Wong, founder of the Disability Visibility Project in San Francisco, tweeted, “Wheelchair and vent user. Born with spinal muscular atrophy. Docs told my parents I wouldn’t live past 30.”

This sharing of pre-existing conditions is paradoxically bringing together a very disparate group of Americans who may not have felt much in common before this vote, and who now are being prompted into action. Disability advocacy groups that usually find themselves competing with one another for attention and funding are finding common cause in opposing the ACHA. Republican House members who voted for the bill will be wearing targets on their backs in the 2018 election. As Japanese Admiral Isoroku Yamamoto said after the 1941 attack on Pearl Harbor, “I fear all we have done is to awaken a sleeping giant and fill him with a terrible resolve.”


MICHELLE K. WOLF is a special needs parent activist and nonprofit professional. She is the founding executive director of the Jewish Los Angeles Special Needs Trust. Visit her Jews and Special Needs blog at jewishjournal.com/jews_and_special_needs.