Patient Congressional Letter

SCRS has created a letter to send to your US congressional representatives to advocate for underrepresented groups to more easily participate in clinical trials. More than 150 people signed the letter during the 2023 Diversity and Oncology Summits!

Instructions:

  1. Visit house.gov
  2. Scroll to “House Overview” and enter your Zip Code
  3. Enter your full address if needed to determine your district representative
  4. Click the email icon next to your representative
  5. Update the template below with your personal information and send
  6. Optional: Download the SCRS letterhead and convert to PDF before sending

Congressional Letter Summarized Template

Please ensure your letter is 2,000 characters or less

Dear Congressman/woman:

I am committed to the advancement of diversity in clinical trials and eliminating barriers for underserved patients.

Per the WHO, acknowledging health as a human right recognizes a legal obligation to ensure access to timely, acceptable, and affordable health care – yet we continue to perpetuate health disparities through existing legislation – especially as it relates to clinical trial access and diversity.  The purpose of this letter is to highlight several actionable items that can change the current status quo, reduce patient burden, and achieve clinical trial diversity and equitable access.

  1. Establish patient reimbursements as nontaxable income. Congress has raised the cap of reportable amounts for rare diseases. It should be eliminated as taxable income.
  2. Eliminate the newly required CMS Medicaid form created by Section 210 of the Consolidated Appropriations Act of 2021. This form causes an additional and unnecessary burden on the enrollment of the Medicaid population into clinical trials. No other payor (including Medicare) discriminates against their population in this manner. The form is contrary to the intent of the law in increasing diversity in clinical trials.
  3. Establish travel reimbursement for clinical trial participants exempt from the OIG restrictions on travel offerings. The OIG guidance limits amounts and distance for reimbursement.
  4. Allow for clinical trial sponsors to pay for Medicare beneficiaries’ copays and deductibles for routine care items and services required by qualifying clinical trials.
  5. Establish a stakeholder meeting to review barriers to participation, including simplifying the complex and inconsistent rule imposed for trial-related coverage of routine care.

I am asking for your support in advocating for these issues to be addressed in the Cures 2.0 Act. I look forward to working with you on this and other proposals that will improve the lives of people across the United States.

Respectfully,

Your Name

Credentials

Email address

Phone number

Download the official SCRS letterhead to share this letter as a PDF


Congressional Letter Full Template

Please note the full letter cannot be submitted to the house.gov website as it must be 2,000 characters or less. However, you are welcome to use some of the verbiage below as it relates to your interest and priorities.

Date

The Honorable (insert Congressman/women name)

Address

Cite, State Zip

Dear Congressman/woman (insert with actual name):

My name is (name) and I live in (your district). (Insert a personal message; example: I have spent 30 years dedicating my career to the advancement of clinical trials to bring medicines to patients.

Per WHO, acknowledging health as a human right recognizes a legal obligation on states to ensure access to timely, acceptable, and affordable health care – yet we continue to perpetuate health disparities through existing legislation that works for some but not all – especially as it relates to clinical trial access and diversity.  The purpose of this letter is to highlight several actionable items that can change the current status quo, reduce patient burden, and achieve clinical trial diversity and equitable access.

The purpose of this letter is to focus your attention on the issues listed below and the negative impact they have on patients. This causes unnecessary friction for any patient entering a clinical trial. If these issues are not addressed, we will NOT be able to adequately focus on issues we face with diversity in clinical trials. I ask for your support in addressing these points.

  1. Establish patient reimbursements as nontaxable income. Congress has raised the cap of reportable amounts for rare diseases. However, it should be eliminated as taxable income as patients are not in the business of being clinical trial participants.
  2. Eliminate the newly required CMS Medicaid form created by Section 210 of the Consolidated Appropriations Act of 2021. This form causes an additional and unnecessary burden on the enrollment of the Medicaid population into clinical trials. No other payor (including Medicare) discriminates against their population in this manner and the added burdens and cost of the form are contrary to the intent of the law in increasing diversity in the clinical trial population.
  3. Establish travel reimbursement for clinical trial participants exempt from the OIG restrictions on travel offerings. The OIG guidance limits amounts and distance (i.e., only 25 or 50 miles) for reimbursement. These guidelines may work when there is a physician or hospital in every town. In reality, there is arguably less than one trial site per state to service a patient which requires a larger mileage range to cover these patients.  Studies have shown that patients must travel on average much higher distances to get to a clinical trial site.  As a corollary to this, they should change the IRB and OIG rules from equality to equity for transportation reimbursement. If one patient requires $40 of transportation to get back and forth to the trial site and another requires $140, the general norm set up today is equality based (e.g., everyone gets $40).  A revised law can state that transportation reimbursement is equity-based (you can reimburse one $40 and the other $140 as this is what it takes to get both to the trial site).
  4. Allow for clinical trial sponsors to pay for Medicare beneficiaries’ copays and deductibles for routine care items and services required by qualifying clinical trials.
  5. Establish a stakeholder meeting to review additional barriers to participation, including but not limited to simplifying the complex and inconsistent rules CMS imposes for trial-related coverage of routine care items.

I am asking for your support in advocating for these issues to be fully addressed and included in the Cures 2.0 Act.

I am grateful for your leadership in making a difference for patients and ensuring equity and access for diverse populations are possible and required. I look forward to working with you on this and other proposals that will improve the lives of people across America.

Respectfully,

Your Name:

Credentials

Email address

Phone number


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