When someone you love is living with severe, recurrent depression, finding a treatment that might finally help can feel like a lifeline. And then the denial letter arrives.
The treatment isn’t covered. Or it’s “not medically necessary.” Or the insurer wants your loved one to try something else first — when it feels like all they’ve been doing is “trying something else” for years.
It can be demoralizing. But a denial is not the end of the road. Many denials are reversed on appeal, and you, the caregiver, may be the key to making that happen.
“It’s not a hopeless cause. It’s just that not many people file appeals, but a lot of denials do get overturned,” says Tim Clement, vice president of Federal Government Affairs at Mental Health America.
Why Insurance Denials Happen
Insurance denials for mental health care are common, especially for more complex or costly treatments.
Health plans use their own criteria to decide what’s “medically necessary,” and those criteria don’t always align with a doctor’s judgment.
Coverage also varies widely from plan to plan. If you switched plans, you might not have access to the same benefits as last year. Treatments such as transcranial magnetic stimulation (TMS), esketamine, and residential care are especially likely to face hurdles.
And while federal law requires that mental health care be covered to the same degree as physical health care, according to the Mental Health Parity and Addiction Equity Act of 2008, gaps still exist in how those rules are applied.
Things have improved since 2008, Clement says, but “it’s still a little harder to get approval for mental health treatment than it is for a physical health condition.” Clement is an expert on the Mental Health Parity Act and has helped state and federal regulators enforce it.
Don’t Stop at the Denial
A denial is not a final answer. The first step toward getting a different answer is to carefully read the denial letter. Federal law requires that denial letters explain:
- Why the claim was denied
- What additional information is needed (if any)
- How to appeal and by when (you should have at least 180 days)
Deadlines matter, so don’t wait too long to act.
The letter may also offer an alternative treatment, Clement says. “Insurers very rarely just say this service or medication is denied and that’s that. Usually, they say they’ll approve something else and will want to see if you want to fight for the thing that you wanted.”
Getting Started
For many people with depression, even starting an appeal is overwhelming. Severe depression affects energy, concentration, and motivation. That’s why your loved one will need your help.
“The system is not built for simplicity,” says Ken Duckworth, MD, chief medical officer, National Alliance on Mental Illness. “It’s built for complexity, and you’re facing it at a time in your life when you’re least likely to be able to do it. You have to find someone in your life that can help you go the distance.”
Before you start, you’ll need to get authorized to deal with your loved one’s insurance company and their doctor.
Call the insurance company and ask about the process for becoming an “authorized representative” for your loved one. Your loved one will most likely need to sign a form, Clement says.
Build Your Case
Your objective is to build a compelling case that proves your loved one needs this treatment. As you build your case, keep in mind that real people will review your appeal. It’s not an automated system.
The appeals process varies from one state to another. The specific process might also depend on your grounds for appeal. For example, are you appealing against their decision that the treatment isn’t medically necessary? Or are you appealing based on mental health parity? Those two scenarios might need gathering different records. In general, however, you can expect to collect the following types of data and documentation.
Medical records and previous claims
Start with the basics. Make sure you have your loved one’s medical records and all prior claim approvals and denials. Even older records can matter, especially if they show a pattern of recurrent depression.
A numeric measure of depression severity
Make sure you have copies of your loved one’s Patient Health Questionnaire 9 (PHQ-9) scores — or other objective measurement of depression severity — over the years. The PHQ-9 is a nine-item questionnaire that patients answer so doctors can measure the severity of depression and whether it’s improving over time. It may be in the patient portal, or you may need to ask the doctor for it.
If the doctor doesn’t use the PHQ-9 or something similar, ask them to, Duckworth says. “That’s very reasonable to ask. It’s like knowing your blood pressure. A health insurance company wants objective evidence.”
Documentation of real-life impact
Documenting functional loss means to describe any activities of daily life that your loved one is unable to do because of their depression.
Be specific. Can your loved one:
- Work or attend school? If not, how many days have they missed, or how long have they been unemployed or unenrolled?
- Care for their children?
- Manage basic tasks such as eating, showering, or leaving the house?
A treatment timeline
List every treatment your loved one has tried and the outcome of that treatment, including:
- Medications (and how long they were used)
- Behavioral therapy approaches
- Procedures, such as TMS or electroconvulsive therapy
- Hospitalizations or residential care
If a treatment didn’t work — or caused intolerable side effects — document that clearly.
Documentation of a parity violation
The Mental Health Parity and Addiction Equity Act requires that insurance coverage for mental health and substance use treatment be no more restrictive than it is for physical health treatment. You could have grounds to appeal the denial under this law if:
- You have higher out-of-pocket costs or are allowed fewer visits for mental health services than other services.
- You have to get pre-authorization for mental health care but not other care.
- Your care was not considered medically necessary, but the plan doesn’t respond to requests for its medical necessity criteria.
- You cannot find in-network mental health providers who are taking new patients, but you can find available providers for other types of care.
- The plan doesn’t cover residential care for mental health but covers it for other health conditions.
Carefully read the health plan’s coverage details, and note these types of discrepancies.
Get the Doctor Involved
Your loved one’s doctor is a key ally. Insurance companies lean heavily on their input. Ask the doctor to provide a letter of medical necessity. This letter typically includes:
- Your loved one’s diagnosis
- What’s been tried
- Why it didn’t work
- Why the requested treatment is needed now
Most likely, the insurer will also contact the doctor during the review of the appeal.
Write a Strong Appeal Letter
The appeal letter is your opportunity to bring together all the information you’ve gathered. It should include:
- Identifying information, including your loved one’s insurance claim number or prior authorization number, insurance ID number, and date of birth
- A clear statement of your loved one’s diagnosis and the treatment you’re requesting
- A summary of the denial
- Clinical evidence of the need for effective treatment, including PHQ-9 scores and history of failed treatments
- A personal narrative describing the daily impact of your loved one’s condition
Examples of appeal letters and appeal letter templates are widely available on the internet. Your state’s department of insurance is a good source.
If you’re writing the letter on your loved one’s behalf, try to include their own words about the impact of the condition. You might quote them describing it. For example, “I can’t get out of bed most days. I haven’t been able to work in months. I feel hopeless.”
Press Through Every Level of Appeal
If your initial appeal is denied, you can appeal to the next level, which involves review by a third-party outside of the organization.
Each step can feel like starting over. But persistence matters.
External appeal
The Affordable Care Act guarantees everyone the right to an appeal by an independent review organization — one that is not associated with your insurance company or employer. If your initial appeal is denied, your insurance company must provide you with information on how to file an external appeal. Use all the information you’ve collected for your initial appeal to make your case to the independent review organization. If they rule in your favor, the insurance company has to abide by the decision.
File a complaint
If the appeal process stalls — or if you believe the denial is unfair — you can file a complaint with regulators. Every state has an agency that oversees insurance. In many states, it’s the state insurance department. If your health plan is through a self-insured employer (meaning the company pays your health care costs directly), you’ll take your complaint to the U.S. Department of Labor instead.
It may sound like a bureaucratic hassle, but don’t be discouraged.
“These departments have dedicated staff working on this,” Clement says. “So, you’ll likely get some sort of action. It’s not like you’re throwing a letter into a void.”
Use every lever you have
If you’re still not getting results, you can still take it to higher powers and seek help from them.
Contact elected officials
Reach out to:
- Your state legislator
- Your U.S. representative or senators
Most elected officials have offices for constituent services that help people navigate issues such as insurance disputes.
“If your member of Congress wrote a letter to your insurer saying that they thought there was something inappropriate about your denial, there’s a good chance the insurer just says, ‘You know, we were wrong about that,’” Clement says.
What to Do in the Meantime
Appeals take time. Meanwhile, your options may include:
- Paying out of pocket (if possible), with the hope of reimbursement later
- Using an alternative treatment that the insurer will cover
- Looking into manufacturer assistance programs for certain medications
None of these options are ideal, but they may help bridge the gap.
The system is complicated and frustrating. But it’s not unbeatable. With persistence, documentation, and support, many families do succeed in getting the care for severe recurrent depression that their loved ones need.
“If you have all of this organized and you have treatment-resistant depression,” Duckworth says, “you should get the care you need.”
