ANDERSON — Lynn Venable was diagnosed with neurofibromatosis, a genetic disorder of the nervous system, at birth. The disease causes tumors to form on nerve tissue throughout the body, including the brain and spinal cord.
Since the early 1980s, Venable has undergone more than 40 surgeries to remove tumors — all of them benign — and has tried a variety of experimental medications to manage her symptoms, with varying degrees of success.
When the tumors regenerate, she says, medication becomes necessary to manage painful side effects. Doctors prescribed a morphine pump in 2000, when the tumors were first discovered on her spine.
Managing her pain isn’t cheap. Venable currently takes about a dozen prescription drugs, including morphine and anti-seizure medication, as well as Forteo, which treats osteoporosis. She estimates she and her husband Jon, who recently retired from his job with the Indiana Department of Correction, spend nearly $10,000 a year out-of-pocket on prescription drugs.
“Basically, it’s just a monetary thing in our budget that’s there, and it’s always going to be there,” Venable says. “It’s like the mortgage. It’s going to be there, and you have to make sure you have the money for it.”
A GROWING PROBLEM
The Venables’ situation isn’t unique. A study recently released by TheSeniorList.com found that Indiana residents rank 11th in the country in per-capita annual spending on prescription drugs.
The study found the average Hoosier pays $1,818 per year for prescription drugs, according to data from the Kaiser Family Foundation, GoodRx and the National Conference on State Legislatures. For senior citizens, the costs are usually even more staggering, as the study found nearly 90% of seniors take at least one prescription medication.
“I think we are a prescription society, not just in terms of the aging population, but in terms of our overall health,” said Stephenie Grimes, administrator with the Madison County Health Department. “We look to medication to fix everything.”
It seems inevitable that the issue will become more urgent. Americans spent $333 billion on prescription drugs in 2017 — nearly 18% of the country’s gross domestic product that year — according to the American Academy of Actuaries. As baby boomers age, many experts say, those numbers will rise quickly.
THE POLITICS OF PRESCRIPTIONS
The subject has become a hot-button political issue, as well. At least 20 states have enacted laws to address cost sharing and deductibles for prescription drugs, according to the NCSL. And several states are considering legislation that would require drug manufacturers to disclose detailed pricing information or explain large price increases.
At the federal level, the Prescription Drug Price Relief Act, introduced in January by Sen. Bernie Sanders, would require the Department of Health and Human Services to review all brand-name drugs annually for excessive pricing. The bill would also require comparison of the price of the drug in question to the median price in Canada, the United Kingdom, France, Germany, and Japan.
According to the Center for Economic Policy and Research, such a law would lower the prices of most brand-name drugs by as much as 50%. The legislation is currently being debated by the Senate Committee on Health, Education, Labor, and Pensions.
In Indiana, the topic has been assigned to a legislative summer study committee. State Rep. Terri Austin, D-Anderson, expects several bills to be filed during next year’s legislative session.
“I think you’ll see some bills filed to cap copays, as other states have done,” Austin said. “I think we’ll hopefully be able to come to some agreement or resolution about the type of regulation and transparency that needs to be applied to pharmacy benefit managers and the impact on drug stores — not just drug chains, but even independent drug stores.”
Pharmacy benefit managers, or PBMs, are third-party organizations that work to administer drug programs on behalf of commercial health plans, self-insured employer plans and Medicare Part D plans. Austin believes that some PBMs operate with less-than-transparent business practices, which makes it difficult for the government to intervene and regulate prices.
“It’s not the kind of thing where you can go in and just say, we’re going to slap this fix on it and hope that it works,” Austin said. “You really need to spend some time trying to figure out how the whole system works so that you can find the right points to insert state government regulation.”
NO EASY SOLUTIONS
Austin would also like to see Indiana, like some other states, consider easing and clarifying restrictions on purchasing certain drugs online or importing them from other countries. Federal law in those areas is murky, to say the least.
An advisory on the Food and Drug Administration’s website, for example, states: “Don’t purchase from foreign websites at this time because generally it will be illegal to import the drugs bought from these sites, the risks are greater, and there is very little the U.S. government can do if you get ripped off.”
Ambiguity in those regulations doesn’t stop many consumers, including Venable, from seeking price relief outside the U.S. She has ordered drugs from Canada in the past and would consider doing so again if she’s convinced the drug will be effective at a substantially lower price.
She and her husband do extensive research to assure they’re getting the best deal — and sometimes, she says, all they need to do is ask.
“Just recently Jon was on a heart medication that was going to be $300 (per month). He called our insurance company and asked them for a like medication, and they found one for $19,” she said. “You have to be proactive and not just accept when the doctors say, ‘Here’s medication, take it.’ A lot of times they’re not considering cost.”
Local hospitals also have programs in place to help patients plan for and manage prescription drug expenses. Community Hospital Anderson has a staff of case managers to review medication options and help patients make informed choices.
“We utilize discounted and free prescription lists at area pharmacies and online resources such as GoodRx and NeedyMeds to locate the lowest prices available,” said Brandy Forrer, RN, a case manager at Community. “We’re also able to help with obtaining coupons and finding assistance programs.”
St. Vincent Anderson Regional Hospital “has put a lot of effort into creating evidence-based protocols that provide the most effective therapies for various conditions and to help reduce drug costs,” said Tangela Floyd, director of public relations. “We hope future changes ... will meaningfully impact drug prices, increase competition and transparency and increase overall health care access and affordability.”
Venable remains unconvinced that any meaningful solutions will happen soon.
“The pharmaceutical companies, they’re there to make money,” she said, “and that’s their right to make money — but not at the cost of our senior citizens. The government has their foot in so many things, but yet without their control, the pharmaceutical companies are going to keep doing what they’re doing.”
Follow Andy Knight on Twitter @Andrew_J_Knight, or call 765-640-4809.