Alternative funding programs hinder access to medications

When Julia Smith* reviewed her health insurance plan for 2024, she noticed something unusual. Her health insurer no longer covered her immunoglobulin (Ig) replacement therapy and instead offered her the option of using a company called SaveOnSP to assist with obtaining her Ig product.

“It started raising red flags right away because the information provided generated more questions than answers. It was almost as if it was intentionally vague. Something felt very rotten,” she said.

Smith’s skepticism of SaveOnSP proved correct. SaveOnSP is an alternative funding program (AFP), not a health insurance company. An AFP acts as a third-party, for-profit vendor controlling access to specialty medicine not covered by an insurance plan. The reason the insurance plan does not cover a drug is driven entirely by the AFP.

AFPs approach businesses and encourage them to drop coverage of high-cost specialty medications to save money on insurance premiums. The AFPs also assure businesses that they will find funding for the drug so the beneficiaries get the medicine they need.

When a business drops the specialty medication from its health plan, the beneficiary is no longer insured for that drug, even though they are still making payments for healthcare coverage under the plan. AFPs then take over the responsibility of providing the specialty medication to the beneficiary who is now ‘uninsured’ for that medicine.

“They tell this patient you are no longer covered for Ig treatment, but if you work with this company, they will make sure that you have access to your drug by applying for financial assistance,” explained Immune Deficiency Foundation (IDF) State Policy Director Matthew Prentice.

The beneficiary must agree to the AFP’s requirements or pay for the drug themselves. The AFP operates on behalf of the beneficiary to seek money from patient assistance programs (PAPs), funds designed to aid under- and uninsured patients, to pay for the drug. Funding for PAPs comes from pharmaceutical companies, government agencies, and charities. AFPs earn profits in this intermediary role by keeping a portion of the money collected from a PAP as a fee.

“During this time, you'll likely experience an interruption in the medication that you're seeking. You're confused. You're having delays in your treatments. Your doctor is wondering why you’re no longer covered. It causes a huge confusion,” said Prentice.

“[The beneficiary goes] from being a patient that has coverage—they pay their premiums, they have a deductible, everything's normal—to now only having access to medication through this alternative pathway. It’s kind of like you're always able to pay your grocery bill, and then all of a sudden, you're forced into seeking financial assistance. You’re just kind of pushed into it for no reason.”

AFPs impact patients in a variety of ways:

• A patient may experience an interruption in coverage that delays their access to a lifesaving drug, possibly for months.
• A patient may be found ineligible for funding from a PAP because their income is too high.
• A patient may be found ineligible for funding from a PAP because the AFP has maxed out the amount allowed, leaving the patient to pay the bill.
• A patient may not be able to continue the same medication.
• A patient may have to sign over power of attorney to the AFP before it will obtain the medication for them.
• A patient is vulnerable to the dangers of using imported drugs, a practice used by some AFPs to save money. Imported drugs are not subject to the same safety guarantees as those produced in the U.S. They could be less effective or, worse, contain harmful substances.

AFPs present ethical and legal issues. Diverting funds away from the PAP for those who should be covered by insurance leaves less for those who truly need the money to pay for the drugs. In addition, importing drugs from other countries is against U.S. Food and Drug Administration (FDA) regulations.

“The AFP, SaveOnSP, caused the lack of coverage and is committing fraud. It is using patients to take in as much money as possible from needs-based assistance, including charities and non-profits,” said Smith.

“I find it utterly unconscionable that not only are vulnerable patients with rare diseases being used to take in as much money as possible, but also alternative funding programs are taking advantage of manufacturer-sponsored programs that were intended to reduce medication costs for patients, thereby increasing the annual out-of-pocket costs to patients. It is already a struggle having these illnesses, and then add on all of this unnecessary stress just having to afford your medications every year.”

Pharmaceutical companies have begun to push back on the AFPs. Most recently, Abbvie filed suit against AFP Payer Matrix in May 2023, alleging a “fraudulent and deceptive scheme.” Abbvie also enacted a policy that disqualifies anyone with an AFP from applying for funding through its assistance plan.

Other examples of AFP companies include:

• ImpaxRx.
• PaydHealth.
• RxFree4Me.
• SHARx.
• Script Sourcing.
• Horton Group.

Diagnosed with common variable immune deficiency (CVID) and other chronic illnesses, Smith said the stress of having her medications removed from the health plan and sent over to be managed by an AFP negatively affects her health. She said only those with expensive medications on the health plan are targeted, while everyone else on the plan is covered.

“Employers were solicited to elect coverage through SaveOnSP rather than distribute the cost of specialty medications via increased insurance premiums amongst all employees. It feels as though rare disease patients are being treated as if they are burdens,” said Smith.

IDF is exploring legislative policy to combat AFPs. For now, the issue is best addressed by educating employers and benefits administrators and making patients aware of AFPs and how these types of companies impact them.

"It’s important to advocate for yourself with your benefits administrator," said Prentice.

*Julia Smith is a pseudonym for a PI community member who requested her real name not be used for this story.