When it comes to staying up with evolving social trends or any development that might be attributed to the wheels of progress, Missouri isn’t merely the Show-Me State. It’s the Show-Me-That-All-49-Other-States-Are-Changing-First State.
And no, I’m not referring to the fact that ours was among the last states to outlaw bestiality. Google “Missouri lags behind” and you’ll find how sadly the state has historically trailed the nation in 911 coverage, insurance pricing transparency, lifesaving tests for babies, and all sorts of other important things.
If we’re not the nation’s caboose on every social train that just left the station, then we’re pretty close. Had the U.S. Supreme Court not legalized same-sex marriage, Missouri was on pace to become the 54th state to do so.
Well, then, get ready for this: Medical science is marching on at a rapid rate when it comes to treating hepatitis C, a contagious and often deadly disease afflicting more than 3 million Americans. In the past few years, treatment of the disease has been revolutionized by the pharmaceutical industry’s release of a series of new drugs with cure rates pegged at 96 percent or better.
That’s the good news. The bad news is that, as is its custom, Big Pharma celebrated its good work with astronomical drug prices inflicting billions in new costs on healthcare budgets across the land. Pills cost $1,000 apiece. Treatment regimens initially ranged from $84,000 to well above $100,000 per patient.
Medicare spending on hepatitis C drugs nearly doubled in one year, rising to $9.2 billion in 2015 from $4.7 billion in 2014. This has caused much political consternation (understandably) and a nine-fold increase in deductibles. But as a tradeoff, liver cancers have been prevented and lives have been saved. It’s complicated.
At the state level, Medicaid directors were panicked at the prospect of ravaged budgets, and most of them tried to ration coverage by providing it only to the most seriously ill. To do this, many states employed a “fibrosis score” to measure the degree to which a patient was ill (ranging from 0–1 for mild fibrosis to 4 for cirrhosis, marked by severe scarring and life-threatening decline in liver function).
As one might expect from a state with a far-right legislature utterly hostile to the very notion of Medicaid, Missouri is one of the states providing the least possible coverage to its recipients, some 13,000 of whom are afflicted with hepatitis C, according to government estimates. As to saving livers and lives, well, the budget comes first and last. It is not complicated, as far as Missouri lawmakers are concerned.
But now the state is about to face a problem. As the new drugs have burst upon the scene, the medical community’s standard of care has evolved and the doctors’ collective advice has become clear: Everyone with hepatitis C should be treated, without regard to fibrosis score. The dramatically improved cure rates have changed everything.
Those following doctors’ advice include the Medicare program, the Department of Veterans Affairs, and the vast majority of private health insurance plans. Couple that with recent warnings to the states from federal Medicaid officials that they may be running afoul of the law by rationing coverage, and the times, they are about to be a-changing.
There’s also evidence that as new drugs continue to come onto the market, the outrageous pricing is coming down a bit through competition. The pharmaceutical companies are also facing legal challenges from some states over their practices, and that could result in cost reductions. And it’s worth noting that for a state like Missouri, the federal government pays some 62 percent of the drug costs.
The states have been left clinging to a rationing system that has been exposed. If Medicare, VA, and privately insured patients are covered for the new drugs in the mild fibrosis stages, what’s the justification for denying the same degree of coverage to Medicaid recipients—that they’re poor?
Besides, there are compelling public health reasons to capitalize on the recent medical progress. When earlier-stage patients can have hepatitis C cured, it not only alleviates suffering but also helps prevent the need for more costly procedures down the line (liver transplants can cost $400,000 or more), and it curbs the spread of the highly contagious disease, arguably an even greater long-term savings to public healthcare budgets.
The train is about to leave the station. The fibrosis scoring system has now been abandoned by Delaware, Florida, Massachusetts, New York, and Connecticut, among others. Those states are now doing the right thing, making the drug available to all Medicaid recipients who need it. More states are certain to follow.
But what about Missouri, which might be expected to become the last state to reform its approach? It’s almost inconceivable that the legislature would voluntarily expand coverage, but it soon might receive some “persuasion” on the judicial front.
The state was sued October 18 over “its arbitrary improper policies that restrict treatment only to the sickest beneficiaries.”
Filing the suit on behalf of two Medicaid recipients who were denied “medically necessary treatment” were the Saint Louis University Legal Clinic, Legal Services of Eastern Missouri, and the National Health Law Program.
There’s reason to hope that the public interest attorneys will emerge as heroes. This is one of several legal challenges nationally to the notion of rationing coverage only to the sickest individuals, and in response to one of them a federal judge this summer ordered the state of Washington to abandon the practice.
For all the technical issues involved, a simple question begs an answer: What are we saying by only providing late-stage coverage when the medical community clearly believes it’s no longer acceptable practice to deny such treatment to earlier-stage patients?
With Medicare, the VA, and private insurers offering coverage to hepatitis C sufferers at all stages, states like Missouri stand apart by essentially offering the following message: “If you are covered by Medicaid in Missouri and suffer from hepatitis C, the state would like you to know that we’ve got you covered. Sort of. But first, you’ll need to get deathly ill.”
Who does that leave out? Apparently people like the two plaintiffs represented in the lawsuit against Missouri. There’s J.E.M., a 45-year-old man who lives alone in Imperial and suffers not only from hepatitis C but also from pancreatitis, spinal osteoarthritis, and high blood pressure. And there’s J.L.M., a 36-year-old woman living with her two teenage daughters in Foley.
Both plaintiffs report that they suffer from chronic fatigue, and both claim to be living in fear and anxiety. J.E.M’s father died of the illness, and J.E.M. is concerned that he will as well. J.L.M. says she’s constantly concerned about infecting her daughters and bleaches her bathtub every time she shaves her legs.
Both plaintiffs have had three screening tests that showed no alcohol or drug use, tests that aren’t part of the law but are required under the state’s rules, presumably because many—but not all—hepatitis C sufferers have become infected through needles.
Both plaintiffs had the effective new drugs prescribed to them by their doctors. Both had these prescriptions denied by the state of Missouri because they were not deemed sick enough on the basis of their fibrosis scores. After all, what do their doctors know about medicine?
Obviously there’s no way to verify their claims from afar, but one has a sneaking suspicion that people like these aren’t lying about their anxieties, seeing as how they have been given an official diagnosis by their doctors of an extremely contagious dreaded disease that claims more lives in the U.S. than HIV.
How would you feel if this were the finding of your doctor and he or she prescribed an exciting new drug that was almost certain to cure your disease, only to find that the state—your healthcare benefactor—had determined that you weren’t sick enough to receive the cure? And then you learned that, as a Medicaid recipient, you were in virtually the only class of “insured” individuals who must meet some sort of near-liver-collapse criterion to receive the miracle pills that are saving others?
We’ll just have to wait and see how the legal challenge to Missouri’s practices turns out. But even if the good guys don’t win, it’s nice to see them stand up for the powerless. That’s more than their elected representatives are ever likely to do.
Ultimately, the battle will be won. It’s not a question of if—it’s a question of when lifesaving cures will be available regardless of the afflicted’s economic status.
It’s coming to Missouri eventually. Here’s hoping we don’t have to wait for 49 other states to get it right first.
SLM co-owner Ray Hartmann is a panelist on KETC Channel 9’s Donnybrook, which airs Thursdays at 7 p.m.