How to navigate health insurance and Medicare with a PI diagnosis

Navigating health benefits, whether it’s private insurance or government-funded programs, can be confusing and frustrating. Missing one small detail could result in delayed care and higher costs.

To shed some light on the nuances of choosing and utilizing a healthcare plan, the Immune Deficiency Foundation recently presented a forum, “Health Insurance for the PI community.” The presentation covered topics including private insurance, Medicare, co-pay assistance, prior authorizations, denials, and appeals.

Before examining coverage, you should be sure to obtain proper diagnosis and documentation of the diagnosis, explained Stephanie Steele, IDF PI Community Engagement Manager. Steps to supporting your journey to coverage include:

• Visit your doctor, preferably an immunologist

• Obtain a thorough work-up and diagnosis

• Save your lab results and diagnosis letter from your doctor

“It’s very important that you have a thorough work-up when you’re being diagnosed. Don’t just have IgG levels drawn. Make sure you have what is called a pneumococcal challenge. That will be the final step in your labs that you’ll need to be diagnosed,” said Steele.

“It’s extremely important to save all of the paperwork related to your labs and your initial diagnosis. I say that because when it’s time for Medicare, you’ve turned 65, but you may have been diagnosed many years before. If you can’t find paperwork and labs, you’ll have to stop therapy for six months because you’re not going to find a specialty pharmacy that will ship your medication.”

When choosing a private healthcare plan, make sure your provider is in-network, and analyze the co-pays, deductibles, and the cost of premiums to see if it’s the right plan for you. Also, determine how Ig therapy is covered under the plan, and what your share of the cost will be after insurance. Keep in mind that prior authorization is needed for Ig therapy, nursing, ancillary medications, and main medications under almost all plans.

What if you change insurance companies and your Ig product is not covered by the new insurance? If you’ve been on other products in the past and you’ve had bad reactions to them and can prove that through documentation, then your doctor may file a non-formulary exception appeal. However, if you haven’t tried the product in the insurance company’s formulary, you may have to change products.

“A lot of times doctors don’t get to pick what medications patients are on. It’s based upon the formulary. You have to go with what the insurance company says you must have,” said Steele. “It’s frustrating, but it happens, so sometimes you might have to switch medications.”

Plans typically have case managers to answer your questions and help you take advantage of the coverage. You will have to call and request the service, however.

If you opt for coverage under Medicare, government-funded health insurance for those 65 and over, understand that benefit coverage is dictated by your diagnosis.

Under Medicare Part B, home Ig replacement therapy is covered for certain qualifying diagnoses. If you qualify for coverage under Part B, after you’ve met a $233 deductible (for 2022) Medicare will cover 80 percent of the cost of the Ig product, and the remaining 20 percent is financed through secondary insurance. Though Medicare Part B doesn’t cover nursing and supplies, you may sign up for the IVIG Demonstration Project to seek coverage for those services.

All other PI diagnoses, considered non-qualifying diagnoses, are covered under Medicare Part D, which doesn’t offer as much financial assistance as Part B. After meeting the $233 deductible, you continue to pay out-of-pocket costs up to $7,050 (for 2022), but during the time you are meeting the out-of-pocket costs, you’ll pay no more than 25 percent of the cost of the Ig. Once you’ve met your out-of-pocket costs, you pay 5 percent of the total cost of the Ig drug per shipment. In addition, under Medicare Part D you’ll need lab work done every six months to send to the specialty pharmacy for the Ig prescription.

Prior authorizations for Ig products are always required by both private insurance and Medicare and can take a few days to a few months to process. Insurance companies require re-authorizations including updated lab work and clinical notes (from an office visit) every 6 to 12 months so the doctor or specialty pharmacy can submit them to the insurance company. Some are becoming stricter and requiring this every one to three months.

When it comes to insurance coverage for Ig, denials do occur. Copies of the denials are sent to patients and physicians with the reason for the denial; they are not sent to the specialty pharmacies. The best approach to dealing with the denial is to have your doctor speak to an immunologist from the insurance company in a peer-to-peer review so that your doctor can make the case for the Ig to a provider who best understands the treatment.

So, how do you manage the expense that comes with Ig and other drugs necessary to treat PI? A few options include:

• Flexible Spending Account

• Health Savings Account

• Specialty pharmacy financial assistance programs (you must request this option)

• Manufacturers assistance programs (for private insurance only) 

• Hardship/assistance programs offered by your infusion provider:

  • Specialty pharmacies

  • Infusion centers

Other co-pay assistance programs available to everyone include:

The Assistance Fund (TAF)

Patient Advocate Foundation (PAF)

Patient Services Inc

Listen to  “Health Insurance for the PI community