The history of health care reform in the United States over the last decade and a half can be described as a story of expanding coverage and access to all Americans, even those with pre-existing conditions. However, after the Affordable Care Act was passed, health insurance providers are working to chip away at those gains.  Health Insurance companies are implementing cost containment policies to limit coverage as much as the providers can get away with while also promoting policies that place more of the costs onto the patient and their families.  Policies such as the prohibition of health insurance premium assistance to copayment accumulator to copayment maximizers have been implemented, and advocacy organizations such as the Coalition for Hemophilia B have fought against them. 

However, there is a more pernicious and horrible practice that continues to expand through certain coverage: the Alternative Funding Program (AFPs).  This practice is where a third-party company approaches self-insured companies with the premise that they can assist in reducing health care costs for the companies. A company is by definition, self-insured when the company directly pays health care claims for the employees of the company versus through taking out third-party insurance coverage.  AFPs market to businesses to encourage them to eliminate any high-cost specialty treatments/medications to lower the company's costs. The pernicious aspect is that these third-party companies assure companies that they will find the treatment the employees need. This model is marketed as a win/win for companies and patients—which is untrue. 

The Alternative Funding Program will assure the company that they can obtain the treatment from the manufacturer; if the manufacturer program is exhausted or denies the treatment, the AFP will go to pharmacies overseas and import the treatment, flouting FDA standards and protocols. If those are exhausted, then an AFP vendor could go to nonprofit patient assistance programs.  If alternative funding is not secured and the drug is not sourced from abroad, the prescription may boomerang back to the employer, who has the option of covering it as a normal pharmacy benefit, rendering the entire process ineffectual or, in some cases, there is a chance that the drug will not be covered at all.

When a company drops its specialty coverage from its health plan, the patient is no longer insured for that treatment, even though they still pay for a part of their premium. The patient must agree to the AFPs requirements or be forced to pay for the treatment out of pocket. The AFP contacts manufacturer-patient assistance programs to obtain compassionate products for the “uninsured” patient. AFPs, in some cases, leave the paperwork for compassionate PAP programs to the patient’s physician offices, which can be dozens of pages—leaving nurses and social workers to sort out the needs of the patient.  This can lead to an interruption in coverage that delays the patient’s access to a life-sustaining treatment, possibly for months.  

Another problem with the AFP model is the continuation of the same treatments. Every manufacturer's PAP is different, and many will not participate as they have become familiar with the motivation of the AFP model and deny the patients.  If this occurs, patients are forced to other, less effective treatments if that PAP can provide compassionate treatment.  The promises provided to the employers are greatly exaggerated. 

The Coalition for Hemophilia B would like to hear your story.  If an Alternative Funding Program has affected you, please email Kim Phelan at advocacy@hemob.org with your story.  Thank you for your assistance.