03/31/2026
One of the policies you raised concerns about at the inaugural rare disease fair was this! We need your help to pass protections for rare disease therapies! URGENT NEED. United Healthcare and Arnold Ventures funded lobby groups are targeting rare disease therapies for experimental cost containment measures that could make the therapy unavailable in Colorado. We need our rare families to email the Colorado Senate and ask for protection until policy impacts better understood. Please send an email and share this post. I’m not funded and can’t pay lobbyists or advertising firms so I need grassroots help! Info below:
Thank you all for attending last night’s prep call for Senate Bill 26-140. We are hoping to preserve access to drugs that treat rare diseases and plasma derived medications from Colorado’s cost containment experiment. Until we understand the impacts of this policy better, these medications need to be off the table.
There will be multiple opportunities to testify, along with opportunities to send emails and call. We will begin in the Senate Health Committee. For this segment we will target members of the Senate. You can use this link to sign up for remote testimony or submit written comments.
Bill: SB26-140, Exempt Drugs from the Prescription Drug Affordability Board Reviews
https://leg.colorado.gov/bills/SB26-140
Senate Health Committee Hearing: April 2, 2026 starting at 1:30p (exact time depends on agenda placement)
Link to sign up for remote or written testimony: https://sites.coleg.gov/public-testimony/sign-up-to-testify/step-1
Quick video example showing the sign up process: https://youtube.com/shorts/b90ts9xijJw?si=1wVS1o9yyMxY3W32
What to Expect In-Person
If you plan on attending in person, we can sign up that day. You will be given 2 minutes for testimony. That goes by quickly and it is beneficial to practice before the hearing. Keep in mind if anything changes, you can always switch to remote if needed. Hearings can be long. The building doesn’t have air conditioning, and can become hot on warm days. Water is allowed in the committee rooms, but snacks and other drinks are not. I will have Liquid IV on hand just in case anyone needs it. If you need a mobility accessible entrance, use the South facing door. Accessible bathrooms are in the basement near the cafeteria. Seating can be limited. If you use a mobility device like a rollator, it could be advantageous to have it just for the seat.
Before the Hearing
We need emails and calls made to the entire Senate from as many potentially impacted Coloradans as possible. Family and friends can send emails as well. The goal is to help them understand there are real human impacts when therapies become inaccessible. I lost access to my only working therapy a couple years ago, so I send x-rays that show the damage. It’s okay to send photos or videos of your loved one to illustrate your points.
Rare disease therapies are more expensive to develop, have a smaller market share, and many of the manufacturers are significantly smaller than the more mainstream pharmaceutical companies.
These reviews are the first of their type, so impacts aren’t known. There are plenty of other drugs to review in order to ensure access isn’t affected.
The Division of Insurance has said they cannot guarantee access and there are no guardrails on this policy to protect patients.
The Board has acknowledged that direct out-of-pocket savings are unlikely.
The DOI and the Board have admitted this could cause increased barriers for patients like non-medical switching, preauthorizations, step therapy, and even formulary changes across the entire class of drugs.
Rare disease patients don’t have as many therapeutic alternatives, if any exist at all.
Local pharmacies may be unable to stock the medication, leading to further access issues and pharmacy deserts.
Explain how loss of access to a working therapy could impact your family.
When we don’t have our working medications, hospital visits increase, reliance on safety net programs increase, and costs can grow significantly greater than the cost of the medication.
Senate Emails
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Sample Email
Dear Senator [Legislator Name],
I am writing to ask for your support of SB26-140 that exempts drugs that treat rare disease and plasma-derived therapies from the Prescription Drug Affordability Board (PDAB) reviews. The rare disease patient community hopes that we can count on your support to protect our access to therapies. We absolutely want affordable access, but are struggling to figure out how capping reimbursements to pharmacies and infusion centers accomplishes this.
At first, we were under the impression that upper payment limits would help Coloradans directly. However, we realized that UPLs weren’t caps on out-of-pocket costs, don’t change what the manufacturer charges, and there is even a risk that pharmacies/infusion centers won’t be able to stock the medication.
One in ten people live with a rare disease, yet only about 5% of the approximately 10,000 rare diseases have FDA-approved treatments. These therapies are often the only options available and can profoundly improve both quality and length of life. Unfortunately, discriminatory data is used in the affordability review so that “quality of life” improvement isn’t taken into effect.
[Insert your personal journey and connection with rare disease]
PDAB policies can unintentionally restrict access—putting patients, two-thirds of whom are children, at risk of losing access to the only treatments designed for them. Importantly, PDABs do not lower patient copayments or premiums, and I will not see any savings when I go to the pharmacy counter.
I respectfully urge you to support SB26-140. For the rare disease community, access to these therapies is critical. Until the impact of upper payment limits is better understood, please protect our care.
Thank you,
URGENT NEED. United Healthcare and Arnold Ventures funded lobby groups are targeting rare disease therapies for experimental cost containment measures that could make the therapy unavailable in Colorado. We need our rare families to email the Colorado Senate and ask for protection until policy impacts better understood. Please send an email and share this post. I’m not funded and can’t pay lobbyists or advertising firms so I need grassroots help! Info below:
Thank you all for attending last night’s prep call for Senate Bill 26-140. We are hoping to preserve access to drugs that treat rare diseases and plasma derived medications from Colorado’s cost containment experiment. Until we understand the impacts of this policy better, these medications need to be off the table.
There will be multiple opportunities to testify, along with opportunities to send emails and call. We will begin in the Senate Health Committee. For this segment we will target members of the Senate. You can use this link to sign up for remote testimony or submit written comments.
Bill: SB26-140, Exempt Drugs from the Prescription Drug Affordability Board Reviews
https://leg.colorado.gov/bills/SB26-140
Senate Health Committee Hearing: April 2, 2026 starting at 1:30p (exact time depends on agenda placement)
Link to sign up for remote or written testimony: https://sites.coleg.gov/public-testimony/sign-up-to-testify/step-1
Quick video example showing the sign up process: https://youtube.com/shorts/b90ts9xijJw?si=1wVS1o9yyMxY3W32
What to Expect In-Person
If you plan on attending in person, we can sign up that day. You will be given 2 minutes for testimony. That goes by quickly and it is beneficial to practice before the hearing. Keep in mind if anything changes, you can always switch to remote if needed. Hearings can be long. The building doesn’t have air conditioning, and can become hot on warm days. Water is allowed in the committee rooms, but snacks and other drinks are not. I will have Liquid IV on hand just in case anyone needs it. If you need a mobility accessible entrance, use the South facing door. Accessible bathrooms are in the basement near the cafeteria. Seating can be limited. If you use a mobility device like a rollator, it could be advantageous to have it just for the seat.
Before the Hearing
We need emails and calls made to the entire Senate from as many potentially impacted Coloradans as possible. Family and friends can send emails as well. The goal is to help them understand there are real human impacts when therapies become inaccessible. I lost access to my only working therapy a couple years ago, so I send x-rays that show the damage. It’s okay to send photos or videos of your loved one to illustrate your points.
Rare disease therapies are more expensive to develop, have a smaller market share, and many of the manufacturers are significantly smaller than the more mainstream pharmaceutical companies.
These reviews are the first of their type, so impacts aren’t known. There are plenty of other drugs to review in order to ensure access isn’t affected.
The Division of Insurance has said they cannot guarantee access and there are no guardrails on this policy to protect patients.
The Board has acknowledged that direct out-of-pocket savings are unlikely.
The DOI and the Board have admitted this could cause increased barriers for patients like non-medical switching, preauthorizations, step therapy, and even formulary changes across the entire class of drugs.
Rare disease patients don’t have as many therapeutic alternatives, if any exist at all.
Local pharmacies may be unable to stock the medication, leading to further access issues and pharmacy deserts.
Explain how loss of access to a working therapy could impact your family.
When we don’t have our working medications, hospital visits increase, reliance on safety net programs increase, and costs can grow significantly greater than the cost of the medication.
Senate Emails
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected], [email protected],[email protected],
[email protected],[email protected],
[email protected],
[email protected], [email protected], [email protected], [email protected], [email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],[email protected]
Sample Email
Dear Senator [Legislator Name],
I am writing to ask for your support of SB26-140 that exempts drugs that treat rare disease and plasma-derived therapies from the Prescription Drug Affordability Board (PDAB) reviews. The rare disease patient community hopes that we can count on your support to protect our access to therapies. We absolutely want affordable access, but are struggling to figure out how capping reimbursements to pharmacies and infusion centers accomplishes this.
At first, we were under the impression that upper payment limits would help Coloradans directly. However, we realized that UPLs weren’t caps on out-of-pocket costs, don’t change what the manufacturer charges, and there is even a risk that pharmacies/infusion centers won’t be able to stock the medication.
One in ten people live with a rare disease, yet only about 5% of the approximately 10,000 rare diseases have FDA-approved treatments. These therapies are often the only options available and can profoundly improve both quality and length of life. Unfortunately, discriminatory data is used in the affordability review so that “quality of life” improvement isn’t taken into effect.
[Insert your personal journey and connection with rare disease]
PDAB policies can unintentionally restrict access—putting patients, two-thirds of whom are children, at risk of losing access to the only treatments designed for them. Importantly, PDABs do not lower patient copayments or premiums, and I will not see any savings when I go to the pharmacy counter.
I respectfully urge you to support SB26-140. For the rare disease community, access to these therapies is critical. Until the impact of upper payment limits is better understood, please protect our care.
Thank you,
