You've just been diagnosed with cancer. One of your first questions, after the shock wears off, is most likely: How much could all this cost? The answer may be hard to pin down.
What's behind the financial strain? Improved but expensive cancer drugs get singled out for blame, but there are other factors, including fees charged by hospitals and doctors and high-deductible health plans that require significant cost-sharing by patients.
Yet there are ways to minimize the financial toxicity of cancer care. Here are seven suggestions:
1. Don't be afraid to talk to your doctor about the cost of treatment. Kathryn Martin, the chief operating officer of Memorial Sloan Kettering Cancer Center in New York, said the cancer center is encouraging its physicians to initiate such conversations with patients — especially since studies show "that patients are reluctant to bring up the issue because they are worried that doctors may withhold treatments." That won't happen, but it needs to be addressed head-on, she said.
2. Early on, ask to see a financial counselor at the hospital where you're being treated. The goal should be to get some idea from the start about how much your care might cost and what help might be available. Steve Ackerman, patient support coordinator for a Kennewick, Wash., cancer clinic run by Kadlec Regional Medical Center, said he frequently taps foundations and drug companies to help patients with their medications costs. "People come in with this deer-in-the-headlights look and we say, 'We can get you fixed up on this,' " he said.
3. Know the lingo. When people talk about out-of-pocket costs, they are talking about deductibles (paid by the patient before insurance kicks in), co-pays (set dollar amounts for a prescription or service) and co-insurance (a percentage of the cost of a drug or service). Under the Affordable Care Act, most ACA and employer-provided plans have out-of-pocket limits. For 2016, the out-of-pocket maximum is $6,850 for an individual plan and $13,700 for a family plan. But patients who use out-of-network hospitals and doctors may end up paying more.
4. Understand that small details matter. That's especially true with ACA plans. You probably already know that many people with low to moderate incomes can get subsidies to help cover the premiums for plans sold on the state and federal marketplaces created by the 2010 law. Yet government subsidies may also be available to reduce out-of-pocket costs if you have a "silver" plan through the law's insurance exchanges.
5. If you're on Medicare, ask a lot of questions. The federal health program for older and disabled Americans can be exceedingly complicated, with options under traditional Medicare as well as through Medicare Advantage, the private-plan alternative. Which is better? Medicare Advantage plans tend to have lower premiums, much better care coordination and prescription-drug coverage as part of the package. But patients can face significant out-of-pocket expenses and more restrictive provider networks.
To reduce out-of-pocket expenses, you can instead enroll in traditional Medicare and add a Medigap supplemental policy as well as a prescription-drug plan. (Remember, basic Medicare generally picks up only about 80 percent of costs — hence the need for a Medigap plan that fills many gaps). But be forewarned: Your total premiums will likely be higher than under Medicare Advantage. And depending on where you live and when you buy, you could be denied a Medigap policy, or have to pay more, because of pre-existing conditions.
Medicare prescription-drug plans, called Part D plans, have a coverage gap — called the "doughnut hole" — that will require you to pick up your own prescription tab once you reach a certain spending level. After a second spending threshold, coverage kicks back in for all but 5 percent of medication costs. Sometimes financial assistance is available to help with these costs.
6. Take a look at the websites of drug makers, foundations and other organizations that offer financial aid. Manufacturers provide various forms of aid, including free drugs and help with co-pays. Independent foundations funded by drug companies and other groups also can help with medication co-pays, and some also will help with premiums. In both cases, the eligibility criteria vary.
Two sites that might be useful are Partnership for Prescription Assistance and NeedyMeds. Two foundations include the Patient Access Network Foundation, which is based in Washington, and the Patient Advocate Foundation in Hampton, Va.
NORD, the National Organization for Rare Disorders, also offers assistance for medication and for costs related to clinical trials. The nonprofit CancerCare and other groups also offer aid, or help finding it.
7. Ask about help for other costs. At Memorial Sloan Kettering, Martin said, patients are expressing growing concerns about costs such as transportation, parking and child care. The cancer center uses donations to help provide aid to eligible patients. It's also exploring ways to reduce travel time for patients — by bundling appointments and treatment into a single day, for example, so that patients need to take less time off work.