Editor's note: Sonia and Jasmine are aliases, at Ms. Williams's request for privacy.
Sonia Williams is a Mississippian through and through. Born in Jackson, she moved through the city's school system, graduating high school and then Jackson State University. Now in her mid-30s, she has lived in the city her entire life. Williams admits, though, she may not be familiar with all of the Magnolia State's small towns -- their heroes and heroines.
Laughing, she faintly recalled Duck Hill, a one square mile spit of land in Montgomery County in the northeast quadrant of the Magnolia State. But she well knows the legacy of the county's Fannie Lou Hamer, the civil rights activist who was born there. "Fannie Lou Hamer's famous quote was 'sick and tired of being sick and tired,'" Williams said, "like me, sick and tired of being sick."
"I'm tired of hopping around here all the time," Williams explained, referring to the chronic pain in her right leg and the cane she uses for assistance. "I'm tired of dealing with this pain. I'm tired of being irritable. I'm tired of taking all these medicines that make me dizzy. I'm tired of being sluggish."
The pain permeates her daily life, compounding her struggle as a single mom to raise Jasmine, her 15-year-old daughter; making sure that the needs of her aging parents are met; and working a full-time job while finding time to study so she can a get her master's degree from Strayer University so she can "better myself." Williams is hopeful that October 1 will be a game changer. She'll be able to sign on to the state's insurance exchange to compare plans and benefits, and after getting answers about rates, deductibles, and co-pays, decide which is best for her.
"I may be happy one day, and I may look like I'm happy, but I'm stressing every day," Williams said. "The cost of insurance is so outrageous here, especially with the pre-existing condition that I have, I can't afford it; it's been very stressful." Should all go well, because insurance companies will no longer be able to use pre-existing conditions to exclude consumers, the policy she selects next month will kick in beginning January, 2014.
Some states have opted to build their own exchange but Mississippi is one of 19 states that have chosen to consign implementation of their exchanges to the U.S. Department of Health and Human Services.
Though the Supreme Court ruled the ACA legal, it also held that expanding Medicaid was subject to each state's approval. The Mississippi legislature's and its governor's antipathy toward the ACA was on display this past legislative session in their decision not to raise the ceiling of the state's Medicaid guidelines. An estimated additional 300,000 residents could have been brought under coverage. One side effect of the political battles is a public often left confused as to which parts of the ACA are in force, particularly when the Obama administration itself has delayed implementation of some aspects of the law.
"It's very difficult when people live in a state where there is a daily declaration – we will not participate in the law – for them to figure out whether or not whether there are any benefits they will have a right to access," said DHHS Secretary Kathleen Sebelius at a recent forum.
Calculations vary on how many adults have pre-existing conditions. The Kaiser Family Foundation estimates that as many as 49 percent of adults under age 65 fall into that category, with 25 percent of those reporting they have been denied coverage in the past. Still, as Sebelius contends, confusion reigns. Many adults who will be eligible for insurance on October 1 may still end up not applying and some parents who have children with pre-existing conditions may have yet to realize their children have been eligible, under the ACA, since 2010.
Williams said her daughter Jasmine is in good health and is up to date on checkups. "She's under the CHIP program and that helps me out a lot," Williams said of the financial assistance from Mississippi's Children's Health Insurance Program. "She's a real good girl," though Williams added, after citing typical parental complaints about Jasmine's occasional petulant teenage ways, "she knows when not to bother me."
When Williams is in pain, dark mood swings sometime set in. The pain or the effects of the medicine become too much for her to manage. Her physical limitation adds to her frustration of not being able to fully participate with Jasmine in activities when those opportunities arise. "I can't do the stuff I want the majority of the time. I can only walk so far."
Her condition also brings other challenges. She is concerned about having to explain to a potential employer about why she might have tested positive on a drug test. She's worried about being able to fight through the fog of medication to be mentally alert enough to complete her master's in good standing. And, right now after 10 years, the cause of her pain is still undiagnosed.
Fibromyalgia, sciatica and a few other possibilities have been ruled out, but without an insurance plan, Williams can't afford any more medical tests. As an independent contractor on her current job, she is offered no insurance. Williams pays for her doctor's pain management regimen and the prescribed drugs from her own pocket. Her current physician, as a favor, gives a discount for her office visits.
Chronic pain patients face a higher level of scrutiny from insurers and the medical community than those with many other disease states. "They are an insurance company's nightmare," said one health policy analyst speaking off the record, referring to the cost of treatments that never seem to end. And a physician added that he has had "patients who tried to the game the system by claiming chronic pain in order gain access to the opiates or narcotics used for treatment." Williams, in fact, fears becoming addicted. "It scares me taking all this medicine."
Until now, she has been told by insurance companies – Blue Cross Blue Shield, United Health Care and Humana, one of the companies participating in the Mississippi exchange – that she cannot be insured if she's on a pain management program or that she would have to cease taking her prescribed medications for 12 months before she could qualify. That's a catch-22 she said she couldn't live with. "I'm in too much pain to do that," Williams said.
Several observers, including a spokesperson from Mississippi Insurance Commissioner's office, said, come October 1, Williams will be vetted as to the type of policy for which she qualifies by the same initial criteria as other applicants: age, family size, geography, and tobacco use. She may be assigned to a higher risk pool; she certainly will have to pay and her income will be a factor as well, though she may qualify for a subsidy.
Still, Williams is determined to find a way to use the ACA to forge a new, pain-free life for herself and Jasmine. She has a dollar figure in mind she thinks she can afford, but even if it's a little higher "at this point I'll take it. I just want to make sure it covers my pain management," Williams said. "I'm excited. I can't wait for October 1."