For providers, discussing drug costs with patients should no longer be considered taboo, but rather a core tenet of shared decision-making.
Imagine you're a Medicare beneficiary who has just received a devastating cancer diagnosis. You've been told that your best odds to prolong your life is to take one of the many new oral therapies that have reached the market in the last decade.
The pill is similar in size to a Tylenol tablet and taken daily, just like your blood pressure medication. Yet when you stop by the pharmacy to pick up the first fill, you find there's one big difference: It is going to cost you roughly $3,000, and every month for the remainder of the year it will be another several hundred dollars. There is no annual out-of-pocket maximum, a fact that looms large as you wonder what other drugs you might need in the future.
You're not wealthy, but your income is also above the threshold to qualify for financial assistance. Do you pay for the drug? Is it worth it? Should you ask your oncologist about other treatment options? Given the other financial hardships you're expecting to come with your diagnosis, the weight of the decision is crushing.
This scenario may sound dramatic, but it's one that is faced increasingly by cancer patients— and particularly Medicare beneficiaries with Part D prescription drug plans. A recent study of patients prescribed abiraterone or enzalutamide, two oral prescription drugs for prostate cancer, examined the spending disparities based on insurance status. Among their findings: Medicare patients had a median out-of-pocket cost of $2,149 for their first fill, while those with commercial insurance paid $150. Additionally, the patients who abandoned their treatment—about 5% of all prescriptions—were almost exclusively Medicare beneficiaries.
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 Fixing Medicare Part D. Leukemia and Lymphoma Society. May 2021.
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Decisions to abandon cancer prescriptions—or not to fill a prescription in the first place—may become more common as oncology consumes a growing share of Part D spending. Targeted cancer drugs, which interfere with cancer cell molecules involved in the growth and spread of malignancies, are increasingly picked up at the pharmacy counter rather than delivered in an oncology practice. Oral cancer medications, many of which cost Medicare beneficiaries more than $10,000 a year (and significantly more than that to the government), made up about 60% of the 83 targeted cancer drug indications from 2011 to 2018.
For all their out-of-pocket expenses, patients should have confidence that their prescription cancer medications will help them live longer, enjoy a higher quality of life, or both. Yet, a new study in JAMA Internal Medicine offers a reality check. Among 44 new oral targeted cancer drugs that were dispensed between 2011 and 2018, just 11 had a documented survival benefit. Over those years, the portion of patients getting oral cancer drugs without demonstrated survival advantage increased from 13% to 59%.
This proliferation of clinically uncertain oral cancer therapies, along with the financial stakes to patients, paints a sobering picture. What can oncologists and health plans do?
We need to be mindful that, for the purposes of high-cost cancer medications covered under Part D, many Medicare beneficiaries are functionally underinsured. We should recognize not only the huge financial burden of these drugs, but also the massive emotional burden patients face when deciding what to forgo to afford them.
Before we prescribe these drugs, we need to be sure we're using them judiciously. Are they among the treatments with demonstrated survival benefit in randomized controlled trials? Or have they only demonstrated benefit on surrogate endpoints, such as the ability to shrink tumors, which may or may not translate to longer, better lives?
Patients may ultimately decide to spend thousands of dollars a year even if the survival data is immature. But they have a right to get this information ahead of time and ideally to use the doctor's office as a safe, supportive space to debate whether to proceed.
This is yet another reminder of the challenge to deliver true person-centered care. The ideal treatment plan does more than simply match a patient to a regimen algorithmically. It also factors in patients' values, wishes and goals, as well as their financial health, to reflect what is best for that individual.
The financial toxicity of Part D drugs is, in part, a problem of government health policy where reform could be transformational. In a deal announced recently by Congressional Democrats, their Build Back Better spending plan will limit annual out-of-pocket costs for Part D beneficiaries to $2,000 a year beginning in 2024, while also allowing Medicare to negotiate prices on a very limited number of high-cost drugs.
Given the twists and turns of this legislative process, there's no guarantee that the larger bill or its drug-cost provisions will gain final passage. However, if they do, it could dramatically change the calculus for Medicare beneficiaries deciding whether they can afford a prescription drug.
About the AuthorMore Content by Monica Soni, MD