Without his chemotherapy pills, Luke Webb might not be alive today.
With the medication — a pill named Sprycel that targets cancer cells only, and does not leave patients weak and nauseated like radiation or chemotherapy — Webb said he leads a normal life four years after being diagnosed with chronic myelogenous leukemia, a deadly blood cancer.
He experiences few if any side effects from the pills, Webb said. He leads an active lifestyle, and is planning to start a family with his wife, Molly, whom he married a few months before receiving his cancer diagnosis.
“It’s gone from literally thinking I was going to die, and reading all this stuff on the Internet and everything else, to living a perfectly normal life,’’ he said of the pills. “It’s changed my life.
But there is an unintended consequence to his medication: Webb says he was forced to give up his career as a business development officer, and take a lower-paying job in the marine industry so he could qualify to receive the pricey pills without cost to him, through a financial assistance program from the pharmaceutical manufacturer, Bristol-Myers Squibb.
It’s a trade that Webb, 32, said he accepts in exchange for “a normal life.”
“To get there,’’ he said, “I’ve had to take a much lower-paying job.’’
Families must earn less than $30,000 a year to be eligible for the financial assistance program
Webb estimates Sprycel would cost him about $7,300 for a 30-day supply without the assistance.
He has health insurance, and the plan covers chemotherapy medication — but only when the medicine is administered intravenously or by injection. Because Webb’s medication is only available in pill form, his insurer considers the drug a pharmaceutical benefit and will not cover the cost.
Florida legislators call this disparity unfair, and many have lined up behind proposed bills in the House and Senate called The Cancer Treatment Fairness Act, which would require private insurers to cover oral chemotherapy the same way they cover intravenous or injection chemotherapy.
“It is such a widespread problem, and it is time,’’ said Senate Majority Leader Lizbeth Benacquisto, R-Fort Myers, sponsor of the Senate bill.
“It’s time for us to change the way we’re paying for cancer treatment, and get with the program,’’ added Rep. Debbie Mayfield, R-Vero Beach, who sponsored the bill in the House.
State senators unanimously approved the bill on April 4. In the House, the bill is scheduled for a hearing Tuesday in the Health and Human Services Committee before it can be put to a vote on the floor.
Though similar versions of the bill stalled in the House and Senate during the last two legislative sessions, Benacquisto and Mayfield said the legislation enjoys broad support among leadership in both chambers — with 24 co-sponsors in the Senate, and 79 co-sponsors in the House.
“This is a bill everyone really does agree on,’’ said Mayfield, whose husband, Stan, died of gastroesophageal cancer in 2008.
Health plan representatives, however, have expressed concerns that the bill may conflict with the federal Patient Protection and Affordable Care Act, potentially driving up the costs of health insurance plans for patients.
Michael Garner, president of the Florida Association of Health Plans, said the health plan lobbying group is concerned about the bill’s potential “unintended consequences,” given the broad nature of healthcare reform.
“The industry is in the most transformative period possibly in our history … since Medicare and Medicaid came across in 1965,’’ Garner said. “We are looking at issues with patient care and affordable care, substantial changes with Medicaid in Florida with a state initiative that will change from fee-for-service to managed care.
“There’s so many uncertainties that have been created, especially because of the federal Affordable Care Act, that we’re trying to work through those issues,’’ he said.
Garner said his concern is primarily with the Senate’s version of the bill, which does not provide an exemption for certain health plans and proposes an effective date of July.
The House version of the bill exempts so-called “grandfathered plans,” as defined under the Affordable Care Act, and proposes an effective date of Jan. 1, 2015.
A “grandfathered plan” is a plan that existed on March 23, 2010 — the date the Affordable Care Act was enacted — and that covered at least one person continuously for one year. The designation allows customers to keep the insurance coverage they had before health reform.
Grandfathered plans are not required to provide the same level of benefits and consumer protections mandated for new plans under the federal act, and they are expected to cost significantly less for customers.
So if a grandfathered plan had to cover chemotherapy pills that previously hadn’t been covered, then that new obligation might annul the grandfathered status. And that could mean “substantially” higher costs, Garner said.
Legislators do not share Garner’s concern.
“This isn’t a mandate,’’ Mayfield said. “If an insurance company currently offers cancer treatment, we’re just saying you have to treat the out-of-pocket expense for the pharmaceutical side, the pill, the same as the intravenous side.’’
Benacquisto said legislators have researched the bill’s potential effect on health plans under the federal healthcare act, and they’re not convinced that grandfathered plans would be adversely affected.
“It has not been determined that the implementation of the Patient Protection and Affordable Care Act would conflict with the actions that we’re attempting to take, where people have access to these medications under their insurance policies,’’ Benacquisto said.
“It is a concern that we’ve heard,’’ she added, “but we’ve researched it, and we believe we’re addressing those concerns with the legislation.’’
According to a House legislative analysis of the bill, some health insurers may raise rates to make up for the increased cost of covering chemotherapy pills. But it is unknown how much rates would increase.
Supporters of the bills say coping with a cancer diagnosis is hard enough for patients without saddling them with thousands of dollars in bills every month for medication.
“There are tens of thousands of Floridians like me who are out there, making life and death choices,’’ said Webb, who has told his personal story before state legislative committees.
“The drug manufacturers have been great to give it to me for free,’’ he said, “but it just sucks because of the financial quality of life.
“I could have been saving money for a house, started a business, saved for retirement,’’ Webb said. “I can’t do any of that because of the cost of the drug.’’
Webb, who holds an MBA degree, said all he’s ever wanted is “to be successful at business.’’ But the choice between career and medication was not very difficult.
“It wasn’t even an option,’’ he said, “once you get over the fact and realize being alive and spending time with my wife and family is way more important than business … it’s just one of the things that goes along with the diagnosis. And you learn to live with it.’’
Vanessa Vicente, community outreach manager for the Southern Florida Chapter of the Leukemia Lymphoma Society, said Webb’s story illustrates the complex challenges that cancer patients deal with on a regular basis.
“These are the kinds of decisions that I think most people are really unaware of,’’ she said.
And more people may be forced to choose between their lifestyle and their medication because the trend in cancer treatment has been toward pills that target cancerous cells only and generally have fewer and milder side effects than traditional chemotherapy.
“This is what the future is going to be like with all types of cancers,’’ Vicente said.
There are more than two dozen oral cancer medications that do not have an intravenous or injectable equivalent, including Sprycel, and Gleevec, the pill that Webb was first prescribed after his diagnosis.
According to the House analysis of the proposed bills, more than 25 percent of the 400 chemotherapy drugs in development are planned as oral medications.
The analysis cites Pharmaceutical Executive magazine as stating that patient out-of-pocket costs for oral cancer medicine averaged $2,942 in 2009, which represented a 17 percent increase over the costs in 2008.
But a wave of states have been pushing back on insurance companies that do not cover the pills the same way they cover traditional chemotherapy treatments.
Between 2008 and April 2013, 22 states and the District of Columbia have enacted oral chemotherapy parity laws, and all of them have prohibited insurers from raising rates on intravenous and injectable chemotherapy treatment, Benacquisto said.
Webb said he’s been following the bills’ progress in the Florida Legislature — though the bill may not help Webb, who is enrolled in a grandfathered health plan, if the current House version prevails.
But Webb said he’s not pushing for the legislation for his own benefit.
“We’re doing it for everybody in Florida,’’ he said.
Besides, he added, he’s holding out hope for something bigger in the future.
“I’m optimistic that five years from now there will be a cure,’’ he said, “and I won’t even have to worry about this.’’