The following e-mail was sent to members of the Senate Public Health & Welfare Committee by Rebecca Davis. It is reprinted with permission.
I'm currently waiting on the Social Security Administration to make a decision on my disability case, and was on MediKan (a type of Medicaid for people who have filed for disability and are waiting on a decision), for 12 months, which is the maximum time allowed. I waited months for my MediKan application to be processed, and the only reason I finally got it was because I tracked down former governor Colyer while he was visiting Wichita and let him know how long I had been waiting for my application to be processed, and he had a staff member personally contact the application processing center to push my application through. I knew of several people from my medical support groups who had waited more than seven months and hadn't even heard if their application for Medicaid coverage had even been scanned into the system yet.
Once I was on Medicaid, only the doctor who was employed by one of the hospitals in town accepted Medicaid. My primary care doctor, who I've seen for 19 years didn't take Medicaid, nor did almost all of my specialists, of which I see more than I can count on both hands. My medical diagnoses include Systemic Lupus Erythematosus, Sjogren's Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome, Hypermobile Ehlers-Danlos Syndrome, REM Sleep Behavior Disorder, chronic migraine, occipital neuralgia, and spinal issues including herniated and bulging discs, Degenerative Disc Disease, retrolisthesis and dislocated ribs on a daily basis, etc. I take 24 prescription medications, plus several vitamins and supplements for deficiencies. With such complicated health issues, starting over with new doctors because none of my longtime doctors accepted Medicaid, would set me back years, and might even kill me. The littlest change can trigger a whole cascade of symptoms, and cause my multiple autoimmune diseases to flare. That year on MediKan, I had to pay out of pocket to see my primary care to get my medications refilled, and I used immediate care and the ER since I couldn't afford to see my specialists out of pocket. I barely survived that year, and expanding Medicaid would put me back in that horrible situation, unable to find doctors to treat me.
At one point in 2019, after my MediKan had expired, and I was on an exchange plan, I spent over three weeks with my blood pressure hovering around 60/40, which is dangerously low. I was staggering around seeing double and slurring my words. I was passed out or on the verge the majority of that time. I barely remember those three weeks. My doctors have no idea what triggered the hypotension. Their best guess was an allergic reaction triggered my POTS. A drug I'd been on successfully for a couple years suddenly had to be changed, but first they had to get my blood pressure up in a safe range to in order to have a surgery I needed, before they would attempt to try a different drug. It took several specialists working together to decide on the best course of action to prevent further hypotension crises. If I had been on Medicaid at the time, I probably would have died before I got in to see an appropriate specialist, and since I was so out of it because of my low blood pressure, I wouldn't have been able to explain my complicated medical history, which could have easily led to me being prescribed meds I'd previously had bad reactions to or that exacerbated one of my many medical conditions. A doctor that was seeing me for the first time would have been disastrous in this situation. Having a medical home and established specialists is key for treating complicated medical patients like myself.
MediKan only lasted a fraction of the time I've been waiting for a disability decision, which is 2.5 years so far. Getting off MediKan and onto a plan through the exchange meant I got to see all the doctors who know me, my medical history, and my medication regimen. Changing medication, or even adjusting a dosage can have disastrous implications, and I need doctors who are familiar with my complicated medical history calling the shots. While I was on MediKan, they limited my drug coverage, and less than half my medications were covered. I went through my savings and retirement account, and through a good chunk of my parents' retirement account to pay for the medications that weren't covered while I was on MediKan. The LAST thing I want is to be forced to go back on Medicaid. I barely survived it the first time. The best thing for my health and well being is to be on a plan through the exchange until my disability is approved and I'm eligible to go on Medicare.
Nobody chooses to go on Medicaid. They're on it because it's their only option. The over 5,000 disabled people on waiting lists for Medicaid is criminal, and you legislators are responsible. You're the only ones with the power to change the status quo, yet you've done nothing the help the most vulnerable in society. In fact, your Medicaid expansion plan would be disastrous to them. Expanding Medicaid to able-bodied adults capable of working and obtaining medical coverage through their employer or the exchange would overload a system that already has too few doctors to see the people already on it. As long as Medicaid payments to physicians are drastically below what they receive from private insurers, there will be a shortage of physicians willing to take Medicaid patients, and adding more patients would make the wait even longer.
Expanding Medicaid won't just hurt the disabled, it will also crowd out the elderly, children and pregnant women. As a former foster parent, I know how hard it is to find a pediatrician who not only accepts Medicaid, but is accepting new patients. The list of physicians accepting Medicaid is deceiving. The vast majority are not accepting new patients, because taking more than a few Medicaid patients means they won't be able to keep their office open, because they'd be losing money.
I have a Master of Health Care Leadership from Friends University, and I've worked in nursing homes, rehab hospitals, an internal medicine office, and an emergency department. I've experienced how Medicaid works from the perspective of an employee in the medical field, a patient, and a foster parent. None of what I saw and experienced was good. I met elderly people waiting for a scarce Medicaid bed to open in a nursing home. I know what it's like to fruitlessly search for a pediatrician to take my foster child who hadn't seen a doctor since they were discharged from the hospital as a newborn and have had no vaccinations. I know what it's like to lose all my doctors because none of them accepted Medicaid. Doctors aren't heartless. They have to make enough money to keep the lights on, and Medicaid doesn't pay them enough to do that. Adding more patients to an already overburdened Medicaid system will result in the deaths of society's most vulnerable.
Please focus on fixing Medicaid for the vulnerable people who have no choice but to depend on it. Increase Medicaid payments to doctors. It is the only way to get more providers to accept it. Get the disabled off the waiting list and covered. Hire more people to process Medicaid applications. Making the sickest people wait more than six months to get an application processed results in deaths. Then do away with the 12-month limit on MediKan coverage. People shouldn't have to suffer and even die while waiting for a disability decision. It makes no sense that we as a society let the sickest, those who are waiting on disability, sustain irreversible damage to their bodies while they wait on the bureaucracy to push papers. Disabled lives matter, and we deserve proper treatment. Medical coverage for able bodied adults who can easily get insurance through their employer or the exchange is the absolute last thing you should be worrying about or passing laws for. They can get off their lazy butts and work. The disabled all wish we were in their places and able to work. The disabled, elderly, children and pregnant women don't have that option. We are depending on you to improve Medicaid for those stuck on it through no fault of their own.
Please preserve (and improve) Medicaid for those who most need it and are being failed by the current bureaucracy, by voting NO on Medicaid expansion. If you're still leaning towards voting yes after reading all this, I challenge you to call five people on the Medicaid waiting list, and ask them to share their experiences with you. If you're still in favor of Medicaid expansion after that, no one could resuscitate your cold, dead heart."
Patient Advocate, Lupus Support Group Leader, Ehlers-Danlos Syndrome Support Group Leader