June 1, 2023
By Anne Dabbs,
NCAN TN Support Group Leader, NET Patient
The expense of living with a Neuroendocrine Cancer diagnosis is a frequent topic of conversation in our support groups and facebook forums. The ways we manage these expenses are as diverse as the disease itself. The bewilderment we experience at the time of diagnosis can be surpassed by the overwhelming array of “how do I pay for all of this?” thoughts we all experience.
In 2022, publications from the CDC stated that more than 1.7 million people in the US are diagnosed with cancer annually. The cost of cancer care is expected to rise annually and by 2030 those costs could reach more than $240 billion. That year we also learned about the passage of the federal Inflation Reduction Act of 2022. A lengthy and complex piece of legislation, one major component will affect many of our fellow Neuroendocrine Cancer patients in that the Act aims to lower prescription drug prices. Whether or not you are currently enrolled in Medicare or Medicaid, it is important to understand the current and future benefits .
Tom Wilson, a NCAN chapter leader for Wisconsin and an active advocate for his wife, Lynn and Neuroendocrine Cancer, has graciously shared their experience of the expected changes in their out of pocket costs. We hope you find his summary of the highlights of these actions beneficial.
Drug Cost for NETs Patient Exceed $325,000 Per Year.
My wife Lynn’s drugs have been by far the most expensive part of the total cost to manage her neuroendocrine cancer the past eight years. And she has had three major surgeries.The cash price of the drugs she takes is $325,000 per year with most of it from just two drugs. Even though she has a Medicare Part D drug plan which covers up to 95% of the cost, her out of pocket expense is over $10,000 just for one of the drugs.
The issue is there is currently no maximum cap on the out of pocket expense. Patients taking expensive cancer drugs either go broke, don’t take the life saving drug or try to stretch them by cutting them in half, taking them every so often, etc.
You can see from the chart below what the out of pocket is for some expensive cancer drugs in 2023 versus 2024 where they will be capped at $3,300. In 2025, the cap will be reduced to $2,000.
Help is on the way.
The Inflation Reduction Act of 2022 (IRA) is a major piece of legislation that will make significant changes to Medicare Part D, the prescription drug benefit for seniors and people with disabilities. The law includes a number of provisions that are designed to lower costs for beneficiaries, including:
• Capping out-of-pocket costs at $2,000 per year. Starting in 2025, Medicare Part D beneficiaries will have a maximum out-of-pocket cost of $2,000 per year for prescription drugs. This means that no beneficiary will have to pay more than $2,000 for their medications, regardless of how much they cost.
• Requiring drug companies to pay rebates if they raise prices faster than inflation. Starting in 2023, drug companies will be required to pay rebates to the government if they raise the price of a drug faster than the rate of inflation. This will help to slow the growth of prescription drug prices.
• Expanding eligibility for the Extra Help subsidy. The Extra Help subsidy is a government program that helps low-income Medicare beneficiaries pay for their prescription drugs. The IRA will expand eligibility for the Extra Help subsidy, making it available to more people.
• Capping monthly insulin copays at $35. Starting in 2023, Medicare Part D beneficiaries will have a maximum monthly copay of $35 for insulin. This will help to make insulin more affordable for people with diabetes.
These are just a few of the provisions in the IRA that will help to lower costs for Medicare Part D beneficiaries. The law is a major step forward in making prescription drugs more affordable for seniors and people with disabilities. In addition to the provisions listed above, the IRA also includes a number of other changes to Medicare Part D, including:
• Requiring Medicare to negotiate drug prices for certain high-cost drugs. Starting in 2026, Medicare will be required to negotiate drug prices for a small number of high-cost drugs. This will help to lower the prices of these drugs for Medicare beneficiaries.
• Providing more information to beneficiaries about their drug coverage. The IRA will require Medicare to provide beneficiaries with more information about their drug coverage, including the cost of their medications and the availability of financial assistance. This will help beneficiaries make informed decisions about their prescription drug coverage.
• Making it easier for beneficiaries to switch plans. The IRA will make it easier for beneficiaries to switch Medicare Part D plans, including during the annual open enrollment period. This will help beneficiaries find a plan that meets their needs and budget.
The IRA is a comprehensive piece of legislation that will make significant changes to Medicare Part D. The law is designed to lower costs for beneficiaries, make prescription drugs more affordable, and improve the quality of care.
The following are some of the benefits that Medicare beneficiaries can expect from the IRA:
• Lower out-of-pocket costs. The cap on out-of-pocket costs at $2,000 per year will help to protect beneficiaries from high prescription drug costs.
• More affordable insulin. The cap on monthly insulin copays at $35 will make insulin more affordable for people with diabetes.
• Expanded eligibility for the Extra Help subsidy. The expanded eligibility for the Extra Help subsidy will make it easier for low-income beneficiaries to afford their prescription drugs. Starting in 2024, people with Medicare who have incomes up to 150% of poverty and resources at or below the limits for partial low-income subsidy benefits will be eligible for full benefits under the Part D Low-Income Subsidy (LIS) Program. The law eliminates the partial LIS benefit currently in place for individuals with incomes between 135% and 150% of poverty.
• More information about drug coverage. The requirement for Medicare to provide beneficiaries with more information about their drug coverage will help beneficiaries make informed decisions about their medications.
• Easier plan switching. The changes to make it easier for beneficiaries to switch plans will help beneficiaries find a plan that meets their needs and budget.
• Starting in 2025, Part D enrollees will have the option of spreading out their out-of-pocket costs over the year rather than face high out-of-pocket costs in any given month. Under the current Part D plan provisions, those taking expensive Tier 5 drugs (as many NETs patients do), immediately fall into ‘catastrophic coverage’ where they are forced to have to pay significant sums in the first few months of a year. Now they will have an option to set up level payments, much like electric or natural gas payments.The IRA is a major step forward in making prescription drugs more affordable for those with Neuroendocrine Cancer and other types of serious cancers. The law will provide beneficiaries with significant financial relief and help them to get the medications they need.
We encourage you to reach out to Medicare experts in your state’s S.H.I.P. office (State Health Insurance Programs) whose contact information can be found at www.shiphelp.org if you need additional information about these upcoming changes.
As always, NCAN is HERE for you if have questions and concerns about your Neuroendocrine journey. Don’t hesitate to CALL US.
Find out more about how YOU can help the NET Community.
Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.
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Betty Fulton says
March 9, 2024 at 2:29 pmThanks Anne, for such great info. I also send a big thank you to those who passed this into law. What a break for cancer patients!
Margaret says
June 29, 2023 at 12:18 pmGood to have this info so clearly stated and readily accessible.
Jane Boundy says
June 11, 2023 at 2:26 pmWonderful news!! Thanks for the clarification of this new legislation Tom!
Alysia Christensen says
June 9, 2023 at 12:55 pmThanks so much Anne for this information!!! It’s hard to keep up with all the changes!!!
Sharon E Miller says
June 9, 2023 at 12:18 pmhelpful information. Thank you
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