Health Insurance Coverage

Having access to quality insurance coverage is vital to someone diagnosed with cancer in the United States. You will need to quickly get up to speed about your health insurance plan because unexpected bills for testing and treatments add up fast. Imagine navigating a major city’s downtown grid for the first time without the benefit of GPS or a decent map.

Whether insurance is through your employer, obtained through the ACA exchange (healthcare.gov) or purchased privately, health insurance contracts generally run year to year, and you will need to know your annual renewal date. This is the time to determine which plan or option available to you best suits your needs. Varying costs for deductibles, co-pays, in-network and out-of-network care and individual and family out-of-pocket maximums can each move the cost needle up or down depending on a person’s situation. If you don’t understand how the “patient responsibility” costs are figured, ask for some clarification from your insurer or employer’s HR department until you do understand how your financial responsibilities will add up. Cancer patients in active treatment frequently meet their full deductible each year. The maximum out-of-pocket for any non-Medicare insurance is set nationally, and for 2021 the amount is no more than $8,550.

High-deductible plans can have a low monthly cost but could be quite costly overall in the face of cancer treatment. Patients with long term health care issues would be wise to avoid the new trend of “skinny” plans and short-term policies due to their very limited coverage and high patient responsibility costs. Some states actually ban these policies. Health maintenance organizations, or HMOs, are often touted as ways to hold down consumer health costs but they can have restrictive networks and rules that can make it very difficult—if not impossible—to get a second opinion or care from neuroendocrine specialists who are out of your network.

Many private insurance companies are offering case managers (often nurses) or patient navigators to help their insured navigate care and coverage issues. These services can be very helpful in streamlining the pre-approval process that your doctor or hospital is required to obtain. Call your plan’s administrator to inquire whether case manager services are available and determine if they can be helpful for your NET care.

The bottom line is that the best way to keep yourself financially secure is to stay covered and to acquire the best coverage available.

Peer-to-Peer Review

Peer to peer requests are calls between your doctor and a doctor from the insurance company to discuss why the testing, imaging or treatment prescribed is medically necessary. These can occur after insurance denials or occasionally prior to further action by the insurance company. You and your doctor have the right to request that the “peer” from the insurance company be knowledgeable about NETs and/or have comparable expertise as your doctor. In some cases, an insurance company case manager or patient navigator may be able to offer preliminary assistance to help you avoid these requests and coverage denials.

Health Insurance Denials

Denials are not uncommon in NETs. Financial toxicity is a real fear when an insurance company refuses or denies coverage of a request by an individual (or his or her provider) to pay for health care services obtained from a health care professional. In this instance, your insurance contract will stipulate what you need to do to appeal that decision. You must follow up on all denials to learn exactly what the issue or situation was that caused it. Here are some common scenarios—

• Wrong code: A billing office may have entered the wrong diagnostic or treatment code. You can find this out by a phone call to your insurance company or you may see it noted on your Explanation of Benefits (EOB) statement. Sometimes a simple re-filing of the claim with the correct diagnostic code is all that is needed.
• Not medically necessary: When a test or treatment is deemed not medically necessary you or your doctor will need to appeal. Keep in mind your insurance is a business contract, and you need to understand what that contract or policy covers, what your rights are, and how the appeals process works. Keep your complete statement of coverage on hand and request one if you cannot locate it.
• Experimental: Sometimes when a treatment or diagnostic tool is approved by the FDA, it takes time for insurance companies to catch up; often the private carriers wait for Medicare to approve before they will consider it established. This denial will likely require the help of your doctor or even further steps to prove it’s no longer experimental (or in clinical trial).

Insurance Appeals

Insurance claims do not always proceed smoothly. When coverage is denied, your doctor may need to request a peer-to-peer review, or you may need to file a formal appeal. Know exactly what your appeals process is before you make the phone call or write the email or letter as most appeal processes have specific time limits for each step once an appeal has started. Don’t be caught off guard. This appeals information and what your insurer is contractually required to cover is contained in your full policy.

• Learn to write a great appeal letter. Examples of appeal letters and more information about navigating coverage denials are available online.
• Search NET organizations online for educational articles and videos regarding denials and appeals. The information can help you better understand the appeals process and how to get the coverage that you have paid for and that you have a right to receive.
• Contact your state’s Insurance Commission for difficult issues and concerns relating to your coverage. The insurance commissioner is a state-level position in all 50 states and duties vary state to state, but their general role is as a consumer protection advocate and insurance regulator. Non-profit organizations like the Cancer Legal Resource Center are also a valuable resource for insurance related issues and other legal rights of people with cancer. See Legal and Financial Resources.

Laws Related to Healthcare

Affordable Care Act
The current law governing all individual and group insurance plans (with a few exceptions)provides several rules important to cancer patients. First and foremost, the Affordable Care Act (ACA) protects your right to obtain coverage despite pre-existing conditions, and companies cannot cancel an existing policy after a person is diagnosed. The ACA also removes lifetime caps or coverage limits. This is crucial for many rare disease cancer patients, especially those with slow-growing disease, who may live a long time and require regular monitoring and costly treatments. Additionally, plans now provide coverage of routine costs while participating in clinical trials.

Family and Medical Leave Act and Other Employment Protections
The Family and Medical Leave Act (FMLA) is a federal program that provides leave protections for patients and family (caregivers). Depending on your circumstances, you may need to research employment protections and laws pertaining to people with cancer and/or their families. These programs are governed by both state and federal statute so what is available to you will depend on where you live. Information about state laws may be found at the Triage Cancer website.

COBRA
Your cancer may lead to a loss of employment. If you resign, get laid off or are let go by your employer, under federal law you are entitled to benefits under the Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA). Rules vary from state to state as to the length of time you can carry COBRA coverage. COBRA plans are available for a fixed number of years and match your employer’s coverage; once that period is over, you will be offered a “guaranteed issue plan” if you have not already purchased other insurance.

Social Security Disability Insurance (SSDI)

You qualify for the Social Security Disability Insurance (SSDI) program if you are no longer able to work, you have worked long enough and recently enough, and you paid Social Security taxes on your earnings. If you qualify, the program pays benefits to you and certain family members. Refer to this government website for all the details: ssa.gov/benefits/disability/.

While each case is different, many NET patients who are eligible based on employment history generally meet the medical qualifications for SSDI, especially if you have liver metastases that cannot be surgically resected. In general, and very simply, the requirements are that you will live longer than a year, and that the condition is not curable. Those who qualify for SSDI will be eligible for Medicare coverage, but not until two years after the SSDI benefits start. You might consider hiring an attorney who specializes in SSDI. Generally you can receive a free consultation that will outline the legal services provided and what they can do for you. There is a fixed fee for this service that is limited to no more than two months of SSDI payments.

We should also note that some employers provide and/or carry disability insurance policies for their employees. This can be short-term and/or long-term disability coverage. If this is the case, you may want to consult with HR about what options are available to you in the event that your disease makes it impossible for you to continue working.

Financial Toxicity & Indirect Costs

Livestrong Foundation found that close to 60% of cancer survivors they surveyed in 2015 faced financial problems and felt financially stressed. Even more feared future financial problems. This situation is often referred to as “financial toxicity,” and the burden on cancer patients is real. The National Cancer Institute lists effects of financial toxicity on patients, such as not taking medicine as directed and experiencing more pain and more symptoms. See Triage Cancer’s “Checklist to Minimize Financial Toxicity.”

See our related posts on health insurance, Medicare, and other financial aspects of medical care for tips to keep medical costs lower.

Indirect costs of care can add up too, especially if your specialized care is not close to home. The American Cancer Society has a travel assistance program, and the Hope Lodge Program provides low cost lodging located near some major medical centers. Many hospitals have lists of hotels near them that offer hospital rates to patients and families—ask for more information from the hospital’s information services or your referring physician. There are some community and medical center programs that are complimentary for cancer patients and that can provide much needed supportive care while managing your cancer care.

Drug Coverage Costs

Medicare Drug Coverage

Medicare drug coverage is known as Medicare Part D. The coverage is provided by private insurance companies with Medicare paying a portion of the costs. Sign up as soon as you’re eligible—if you don’t, you may have to pay a late enrollment penalty later when you do enroll. Be sure the drugs you need are on the Part D plan you select or you could face thousands of dollars in out of pocket costs.

Non-Medicare Drug Coverage

For those not on Medicare, most insurance plans will cover prescription drugs; however, the copays, deductible, and out-of-pocket maximums can vary from policy to policy, and year to year. Check your drug coverage at every renewal for changes in coverage in the event that you have some choice in the coverage.

Assistance with Drug Costs

Most brand name drugs will have some type of copay assistance program offered by the manufacturer that reduces the cost of the drug to typically under $50. You may need to do a web search to find the program for the drug you are considering. These plans may have little or no income verification but in general are not available to those on Medicare. You may also find additional financial support for medication and care through private foundations. One such program providing foundation assistance specifically for NET patients is the Lois Merrill Foundation. For generic drugs, and limited brand name drugs, you may wish to use a program like GoodRx that may provide the drug at a lower cost than what your insurance will provide. You just have to be sure you don’t use Medicare to pay at the same time. NeedyMeds is a 501(c)(3) national nonprofit that connects people to programs that will help them afford their medications and other healthcare costs.