Dee Culp

LIVING YOUR TRUTH: As Republicans say no to AHCA, so does NEPA at health care town hall in Scranton

LIVING YOUR TRUTH: As Republicans say no to AHCA, so does NEPA at health care town hall in Scranton
Decrease Font Size Increase Font Size Text Size Print This Page

“How are we still talking about this in 2017?” asked Peggy Mannion at a town hall to discuss health care in Northeastern Pennsylvania at the Jewish Community Center in Scranton Thursday evening.

Of course, we know how – and why. Seven years to the day that President Barack Obama signed the Affordable Care Act, we stand on the verge of seeing it all be undone, replaced with Trump’s American Health Care Act, which, if passed, would lead to 24 million Americans without health care. In fact, studies found that simply removing Obamacare would lead to 23 million Americans uninsured, which is still one million more insured Americans than there would be under the American Health Care Act. Effectively, this means that we would be better off if Obama had simply done nothing at all than to approve the AHCA.

Currently, zero Democrats are supporting this bill, proving to be as stalwart and cumbersome as Republicans were for the entirety of the Obama administration. Meanwhile, Trump is having additional difficulties winning the support of his own party, eventually threatening to leave the ACA intact if they don’t approve legislation to repeal and replace it.

The atmosphere in the Jewish Community Center seemed friendly and open, although one could understand if it were a bit more tense and angry. I noticed the faces of folks older than I, though there was a mix of ages and a span of generations in attendance. We eagerly awaited Paige Gebhardt, who served in the Obama administration as a senior adviser at the U.S. Treasury from 2009-2012 during the global economic crisis Obama was tasked with fixing – in case Trump, or any of his supporters, would like a reminder of what it actually looks like to inherit a mess – to kick things off. These days, Gebhardt calls NEPA home, so she’s getting a pretty good look at how things are here. It’s good to know we have someone like her in our backyard, a place that Joe Biden once called home and where Hillary Clinton has roots.

Unfortunately, Congressman Matt Cartwright, who was scheduled to attend, could not be there. So, instead, we opened with a statement from him and his promise not to support the AHCA, then moved on from there, hearing from Dr. Karen Murphy, the current Secretary of Health in Pennsylvania.

After running some numbers past us – 1.1 million Pennsylvanians currently insured, five million who cannot be denied for pre-existing conditions, the 10s of thousands receiving mental health care that they would not have had before the ACA – Dr. Murphy cited the $3.5 billion deficit Pennsylvania currently finds itself in and how it would be impossible to support the millions of people who live in the state without health care. “We don’t see a silver lining, here,” Murphy said, highlighting the dire situation we find ourselves in.

Marlee Stefanelli, a licensed professional counselor and a licensed dietitian/nutritionist, took the podium next. Working in the mental health field for the past 11 years, she’s seen the faces of the opioid addiction epidemic we have here and have been combating in various ways. She knows their names and what would be at stake under the AHCA. “30 days, maximum,” she said was the limit on mental health care prior to the ACA. That was the most you’d be able to see a mental health professional before being left to your own means to afford care. The ACA removed that cap and made it possible for us to deal with opioid addiction much more effectively; the AHCA would undo what little success we’ve had and make it worse.

Stefanelli went on to tell the story of her 2-year-old child, diagnosed with Type 1 juvenile diabetes. “We know it’s an autoimmune disease that can be triggered virally. We had no reason to suspect our child would get this.”

Her story highlights the fact that some sicknesses and diseases, which will be incredibly costly to a family, simply aren’t planned for. And as pre-existing conditions, they can be grounds for insurance companies’ rejection of patients. She quickly discovered that her insurance through Highmark would cover the testing device needed to check insulin levels in her child, but not the test strips that the machine uses. If not for Medicaid, she would not be able to afford the strips, which lead to a pharmacology bill of more than $45,000. Medicaid also covers the trip to Philadelphia to see an endocrinologist – something I understand firsthand, as I must travel to Bethlehem to see my own endocrinologist – which Highmark wouldn’t cover because it was outside of her 16-county coverage area. Without Medicaid, her baby might not have a chance to survive without accruing impossibly high bills.

Third in line to speak was Dr. Jennifer Joyce, MD, FAACP, a primary care physician, and professor of family medicine in the Clinical Sciences Department at the Geisinger Commonwealth School of Medicine. She covers rural health care, chronic care, frailty, and social justice in health care and gave firsthand knowledge of the battles patients must face in getting access to health care, and how they were losing battles prior to the ACA, soon to be even worse under the AHCA.

Dr. John Bulger followed, speaking to the importance of stability in health care and of preventative maintenance health care. He cited that when patients don’t use their health care, they wind up sicker, incurring even larger bills than they would have if they’d sought treatment earlier. Programs like the Fresh Food Pharmacy, which ensure that patients are able to afford healthier food options instead of eating junk food that will lead to an increased risk of severe complications down the line, are extremely important to keep around. AHCA, of course, would do away with such programs.

Another speaker, not on the program, discussed that we need to shift the focus away from health care cost and towards health care need, citing that the dangerous belief system of, “It’s not my problem, so why should I pay for them?” This is dangerous and makes the community sicker as a whole. As an educator, he stated that children are only successful if their needs are being met, health care being an extremely important need, and that he “hopes the legislators would have the courage to defend our children against AHCA.”

Eventually, it was my turn to speak. As a member of the LGBT community, the subject of discrimination was on my mind. I noted that health is very much a temporary condition, a privilege that can be removed at any time without warning. To say, “I’ve never been sick, so I don’t need to care for others,” is a sign of privilege and a dangerous way of thinking. Worse, to cite religious beliefs, to deny coverage on moral grounds, or that your moral values exclude empathy for the suffering of those who exist beyond your “approval,” is unconscionable. To say that this is a neighborly, Christian nation, and allow discrimination based on sexuality or gender identity is reprehensible. How much of a slippery slope is the religious, moral argument to deny health care? And would we not find other moral arguments only a stone’s throw away?

Imagine saying to a diabetic, “You did this to yourself by eating too much sugar!” Or an obese patient with heart problems, “You ate yourself to death!” Or telling a cancer patient, “You knew cigarettes were bad for you! You smoked your whole life! You deserve lung cancer!” Or telling a person with AIDS, “You got this disease because you sinned against God! You deserve to suffer and die!” as hundreds of thousands of gay men were told in the 1980s during the AIDS crisis. Or a transgender patient, “I don’t have to treat you because a man will always be a man, regardless of surgery, and your lifestyle goes against my beliefs!”

With the AHCA and the “morality police” guiding the country, how do we know our rights will be met? Who’s the next target for discrimination? How can we turn on each other like this and decide who deserves treatment when we have no idea what kind of illnesses fate has in store for each of us?

On Dec. 31, 2016, I was admitted to the hospital. 48 hours earlier, it was a day like any other until the pain began. Gallstones and mild appendicitis were what I was diagnosed with. How was I to know I’d be spending New Year’s Eve in a recovery room? They prepped me for surgery within an hour of being admitted, and I couldn’t go home until five days later.

Originally, I had delayed going because I didn’t know how much it would cost, even with insurance. I feared discrimination, even though I had been assured in the past that Geisinger does not discriminate and that I would receive the best health care possible. But could I count on that? What good was one doctor’s promise worth?

Much, it would seem because, in the end, I am healthy and alive, thanks to the medical staff.

And although I did have to “educate” several staff members on transgender “etiquette,” and at times I felt humiliated by nurses and doctors using male pronouns despite my medical chart indicating that I was female, in the end, they did their jobs and my health insurance took care of the rest. But there still exists a huge gap of understanding in trans health care in our area. As I mentioned earlier, I must drive to Bethlehem to see my endocrinologist as part of my hormone therapy treatment. Aside from this, there’s Philadelphia and New York – why must we traipse all over the state for proper health care maintenance?

Why must we face doctors who feel it’s appropriate to ask deeply personal questions about our lives and genitals while referring to us with the wrong pronouns? Why must we face doctors who shrug and say, “I don’t know how to care for you. I’m not familiar with treating transgender patients,” when there are so many educational opportunities available for them to acquaint themselves with? In a world where “Trans Broken Arm Syndrome” is a thing under the AHCA, can I count on this situation to become worse? These were the questions I asked of the panel and the audience as I addressed them.

Dr. Murphy assured me that Pennsylvania Governor Tom Wolf will do all that he can to ensure these things do not get worse for our community and reminded me that we have one of our own, Dr. Rachel Levine, at the top level of health care in Pennsylvania. I’m hoping she’s right, that we will see better health care performance for the LGBT community and transgender individuals, and that we will continue to fight the AHCA.

The meeting turned into a Q&A from the audience, hearing from many concerned individuals, including a woman whose child has Down’s syndrome.

“Our communities are being turned against each other,” Stefanelli responded. “I have no problem with paying higher taxes to make sure your child is treated.” It received thunderous applause, as it became obvious that we were all in agreement on one thing – health care should be a right.

“The insurance companies are to blame,” Dr. Joyce shouted out, and she might as well have dropped the mic. The audience was a little stunned, not to mention the man sitting next to her, Dr. Bulger, representing Geisinger Health Plan and Geisinger Indemnity Insurance. But she persisted, stating that insurance companies should turn to a not-for-profit model because, when insurance companies only care about profits, insurance premiums go up, and that’s why health care costs what it does today. I can’t argue with that.

As we closed for the evening, we said our goodbyes, knowing that the next day would bring the answers we were looking for. Thankfully, just hours ago, Republicans canceled the AHCA vote, at least for now. Whether this was due to our voices, among many others across the country, being heard or simply because of infighting in our increasingly ridiculous government, it is our duty to keep the pressure on this wound and work to heal this broken system.

Living Your Truth is a weekly column about the empowerment that comes from being true to your authentic self. It focuses on the LGBT community in NEPA and the news and events that impact it.