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Attention to People with PI Who Are Aetna Policy Holders

August 18, 2017

Aetna policyholders with primary immunodeficiency diseases (PI) are facing challenges accessing the immunoglobulin (Ig) replacement therapy that both they and their physician have chosen. The Immune Deficiency Foundation (IDF) has been working to address these challenges. Aetna’s 2017 drug formulary is a fail-first lowest cost drug formulary. This means that Aetna will only pay for the Ig therapies that are the lowest-cost to them. Aetna’s restrictive formulary, which excludes all 20% subcutaneous immunoglobulin (SCIG) therapies, illustrates why restrictive formularies are not in the best interests of individuals living with PI.

Use of a medication that is not on the formulary requires the individual’s physician to make a request for an exception, which then must be assessed and approved by Aetna. This has become a major problem for people on SCIG who are currently infusing with a 20% solution. The limited formulary presents serious risks to those with PI if they are required to switch therapies, with no medical justification, after being stabilized on one specific Ig therapy. 

IDF has consulted with Aetna representatives, sharing data and research, as well as providing access to consultation with immunologists who are experts in the field to urge Aetna to change this policy. Aetna has shared that they are considering this request for change. In the meantime, these individuals and their physicians will have to continue to go through the process of requesting exceptions to the formulary.

We will continue to advocate for an immediate change to the formulary policy, but we need your help. We’re asking all those in our IDF community that are Aetna policyholders to share your experience by emailing us at Please include the following information:

  1. Within the last few months, has Aetna notified you that you need to change your Ig therapy because of their drug formulary?
  2. Has your physician requested an exception to the formulary on your behalf? If so, was the exception approved or denied?
  3. If the exception request was denied, did you appeal the decision? If not, did you change your treatment?
  4. If you appealed, was the decision overturned?
  5. Have you changed your Ig therapy as a result of Aetna’s formulary? If yes, have there been any negative consequences to the change, including side-effects or reactions, increased burdens such as longer infusion times and increased needle sites, and missed treatments as a result of the need for more frequent treatments?

Your input on this issue is very important to the PI community. We look forward to hearing from you. Thank you!

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