Senate Bill 060 proposes the Colorado Prescription Drug Affordability Review Board (PDAB) “should have no authority to perform an affordability review of, or establish an upper payment limit for any prescription drug designated for a rare disease or condition as defined by the FDA.” 

The proposed exemption of “orphan drugs” in this bill perpetuates a system that prioritizes profit and allows companies to monopolize the market to keep prices inflated. 

It’s no secret there are already numerous disparities in health care, particularly when it comes to prescription access. If pharmaceutical companies are left unchecked in the fight against high prescription costs, the health and well-being of Coloradans — particularly those with rare illnesses — will hang in the balance. Companies will cash in, but patients will suffer as drug costs remain out of reach.

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I think of the direct impact on my family, as I am a caregiver and wife to someone living with sickle cell disease. This rare disease, affecting a reported 100,000 Americans and fewer than 500 Coloradans, is considered one of the first documented genetic blood disorders. 

Now, 114 years later, multiple cures and medicinal therapies are within reach. But realistically, how can they be, with therapeutic management and curative drug treatments costing anywhere from $50,000 to $2.2 million? 

Adakveo and Oxbryta, two approved treatments for sickle cell, were included on the 2023 PDAB Eligible Prescription List for an affordability review. And with good reason, considering 12-month supplies cost approximately $61,000 and $96,000 respectively.

According to the American Society of Hematology, sickle cell patients already incur an estimated lifetime cost of $1.6 million between hospitalizations, pain management and coordinated care across specializations such as hematology, pulmonology, orthopedics and cardiology.

The high cost of managing my husband’s health is already a tangible financial burden for my family — so much so these annual prices are completely unattainable for us. Simply put, we just can’t afford to pay for these treatments. We make too much income for patient access programs, but not enough to afford such exorbitant out-of-pocket costs.

If prices remain high, our reality will never be about the relief these medications could offer him. Instead, we’ll continue to pay into that lifetime $1.6 million tab, cobbling together health management tactics and unexpected emergency room visits to manage the excruciating pain caused by his condition.

Amazing work is happening at hematology research centers across our state, despite the small size of Colorado’s sickle cell community. The University of Colorado Anschutz Medical Campus runs the Colorado Sickle Cell Research and Treatment Center, along with a pediatric component at Children’s Hospital Colorado. SB60 effectively cuts into the heart of the advances being made. It says notoriety for ongoing research is good enough, but the people impacted by its costs are an afterthought. It effectively highlights optics over options.

Rare disease patients across our state are fighting a similar uphill battle — managing day-to-day symptoms, searching for supportive, trauma-informed medical care, seeking diagnoses and finding possible treatment paths.

Excluding orphan drugs from the PDAB review process will continue to deny rare disease patients access to life-changing drugs without breaking the bank. And patients with rare diseases are among the most harmed by uncontrolled drug costs. Exempting orphan drugs from PDAB reviews allows pharmaceutical companies to continue to reap high profits with no market competition, and legally keep their prices high for decades.

As long as we prioritize money over solutions, real people will bear the consequences. Prescription drugs don’t work if people can’t afford them.

The PDAB was specifically designed with the goal of managing costs and encouraging prescription affordability for Coloradans. In fact, in 2021, a bipartisan 71% of Coloradans supported the creation of the PDAB to review and set upper payment limits on high-cost drugs. This board is Colorado’s only tool to hold pharmaceutical companies accountable and help rein in out-of-control drug costs. 

It’s critical to seek out and support legislation that eliminates disparities in health care access. SB-60 should reflect our priorities as a society to care for our communities, not the profits of pharmaceutical companies.

We owe it to Coloradans to find solutions that help them. We deserve better than SB60.

Tamika Matthews resides in Denver County. She is a caregiver of a rare disease patient, a member of the Colorado Consumer Health Initiative’s Community Advisory Board and a health care advocate.