Patient Advice: After 18 months of treatment, now Aetna says there’s no “documented indication”

Question: I was diagnosed with CVID and started taking medication. After several months, my progress stalled, and my physician increased my dosage. I felt amazing — with no sinus infections or missed days from work.

After approving this treatment plan for more than 18 months, Aetna denied my last treatment, claiming “no documented indication for the use of IVIG in this member with non-responsiveness and evidence of recurrent severe difficult to treat infection.”¬†For 18 months, there was plenty of documentation for Aetna to approve, but now they are claiming I don’t need it.

Please Help,

Florida Patient Denied by Aetna 


CVID is a serious condition. Given the seriousness and complexity of the medical issue, it doesn’t seem fair to add insurance barriers that disrupt your care.

First, identify the type of insurance and how you receive coverage. Are you insured through your employer, a Medicare Advantage Plan, Managed Medicaid, through the ACA Marketplace? If it’s through an employer, it would be good for you to know if your employer is “self insured” or “fully insured.” If self insured, you have an option to ask your employer for assistance (as they are really the insurance company in this instance). If you are fully insured, you can also seek out help from the state about additional patient protection and assistance.

Next, it sounds as if you were on a path with the right drug and dosage but now need to submit more documentation. It made me wonder if you changed jobs or if your benefit year doesn’t coincide with the calendar year. Sometimes, if your health plan changed Pharmacy Benefit Managers or Specialty Pharmacies, that could account for the sudden change and the mention of a lack of documentation after 18 months.

No Documented Indication: Start with Formal Letter of Appeal

I’d suggest that you start with a formal letter of appeal to the health plan. Either you can do this or your provider can do this. Directions to file an appeal should be on the website or you can call and ask member services. If you received a denial, you can state in writing everything you noted here. I’d suggest that you explain the history of your illness, the names of medications you have tried and for how long, the step wise approach your provider took and the clinical response that you had. Please state the frequency of any infections (such as sinus infections) with other drugs. Send any medical records, lab results, letters from your providers, etc. along with the appeal letter.

If you’ve had fewer trips to the MD office, ER, or hospitalizations, you can make the case that this medication has saved them the prior costs of treating infections in past years. For example, “I used to have 12 sinus infections a year, 10 ER visits, and 3 inpatient hospitalizations, since Hyqvia, I only have 2 sinus infections per year.” I know that this is a lot of work, but it will be worth the effort if they approve coverage.

If you are awaiting treatment because of this, you can file this as an “expedited appeal” which requires the insurance company to respond within a day or so. Just be sure to write in big letters- EXPEDITED APPEAL- on the to of the letter to alert them.

Submit a 2nd Level Appeal to an External Review Board

If the first letter of appeal doesn’t work and they still deny the medication, you can submit a 2nd level appeal which goes to an External Review Board. This goes to an outside entity (separate from the insurance company). The denial letter will have the information for you on where to send it. A word of caution: you only have a limited amount of time to file this (usually 30 days, but check what your denial letter states).

Again, share the information you already submitted (so, always keep a few copies of the packet on hand) and if you have any medical articles that support use of this drug vs. the other options, you can include those as well. The drug company website or your provider might have some of this information to include.

Speak to Your HR Person

If you are still denied and you receive coverage from an employer, municipality, city or town, you should speak to the HR person who is in charge of medical benefits. Often, they can intervene with the insurance company to manage this and cover the medication as a benefit as opposed to being covered under the medical policy of the health plan.

If by any chance you have had ‘worker’s compensation’ benefits paid out, you can explore that option for coverage or payment as well.

Contact State Ombudsman or Other Agencies

If your insurance is not covered through an employer, you can usually reach out to a state Ombudsman or call your Attorney General’s office to inquire if there is an Office for Patient Protection. It may go by another name, but most states have an office to review patient care cases and sometimes they can intervene with the health plan for coverage.

Also, it might be worth a call to the drug company looking for assistance to ask if they can provide direct assistance to you for the appeal. The pharmaceutical companies have a great deal of resources for patients about their product and might be able to offer additional suggestions based on what similar patients have done.

Find a Patient Advocate

Another resource is to seek assistance from a Patient Advocate who could help you through the process. It may cost you a bit, but it might be worth it for a long term condition requiring specialized medication such as this. is a resource to find a Patient Advocate in your area who could focus on your particular situation.

We’re still not out of options…. I have seen people mount “” campaigns by putting their story in the news and within hours, the denial was reversed. Health Plans do not want the bad publicity. I’m not suggesting that as a first step, but I’m letting you know that it has worked for others.

Whatever path you take, please make and retain copies of any and all correspondence with providers and the heath plans. Write down who you spoke with, the date and the expected resolution date.

Are You Facing a Barrier? Ask Us Your Question

At Patients Rising, we’re working to help patients overcome insurance barriers to accessing the right treatment. Are you experiencing a barrier to access? Tell us your story.

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.