Financial Disclosures: Melissa Malone receives financial compensation from Parapharma Tech, the makers of Gelmix and Purathick Thickeners.

This guest post is part of a corporate partnership with Parapharma Tech. Feeding Matters is a nonprofit organization that works with corporate sponsors to support its mission. The opinions expressed in this guest post do not necessarily reflect the views of Feeding Matters.

Nearly one million children in the U.S. are affected by dysphagia, a swallowing difficulty that makes safe feeding essential. For these children, thickeners are a life-saving solution, prescribed to reduce the risks of aspiration and choking. However, the Medicaid reimbursement system for thickeners is outdated and often puts pediatric patients at risk by favoring less effective and less safe options.

The Problem: How Weight-Based Reimbursement Prioritizes Unsafe Thickeners

Medicaid reimburses all thickeners under a single code: B4100 (Food Thickener, administered orally, per ounce). However, reimbursement is based on the weight of thickener, not the effectiveness, creating a significant disparity in the reimbursement rates between cornstarch-based and gum-based thickeners.

• Cornstarch-based thickeners weigh 4 to 6 times more than gum-based thickeners, leading to higher reimbursement rates. This outdated system favors products that are unsafe for infants and young children.
• Cornstarch thickeners break down enzymes in breast milk and saliva, making them unstable and unsafe.
• In contrast, carob bean gum-based thickener (Gelmix) is safe for infants, preserving the integrity of breast milk and formula while providing stable thickening.
• Other gum-based thickeners are generally recommended for older children and adults, offering palatability, stability, and ease of use.
• Healthcare professionals consider many factors when recommending a thickener for patients including the patient’s age, safety of use, allergies or food sensitivities, nutritional content, ease of use and patient tolerance.

Because gum-based thickeners weigh significantly less, they are reimbursed at much lower rates, making them difficult to access. As a result, suppliers often substitute the recommended gum-based thickener with a cornstarch-based product, even when a healthcare professional has specifically recommended a safer option.

This leads to a concerning situation where cornstarch thickeners are provided to infants and young children, despite their significant safety risks. Many caregivers may not fully understand the dangers posed by cornstarch thickeners, increasing the risk for pediatric patients who may not be receiving the safest options for their care.

Example: New York Medicaid Reimbursement Rates

To highlight the issue, consider New York’s Medicaid reimbursement rates. The state reimburses as little as 53 cents per ounce for thickener. Here’s the problem:

• Cornstarch-based thickeners require 6 grams to thicken 4 ounces, while gum-based thickeners only require 1.4 grams.
• This results in a reimbursement of 12 cents per serving for cornstarch and only 3 cents per serving for gum-based thickeners.

This reimbursement disparity creates a barrier to access, forcing suppliers to provide cornstarch-based thickeners despite the safety risks.

The Issue of Thickeners Not Being Recognized as a Medical Necessity

In some states, Medicaid does not recognize thickeners as a medical necessity, meaning they are not covered. This forces families to either go without or pay out-of-pocket, limiting access to safe and effective solutions. Some families may even be pushed toward more expensive treatments, like feeding tubes. It is essential for Medicaid to recognize thickeners as a medical necessity to ensure children have access to the best possible care.

Solution: Transition to Cost-Based Reimbursement

Medicaid should recognize thickeners as a medical necessity and transition from weight-based to cost-based reimbursement. A cost-based model reflects the true cost and effectiveness of thickeners, ensuring safer options are accessible.

• Some states have already adopted cost-based reimbursement models, ensuring fairer reimbursement and better access to safe thickeners. Click here to check your state.
• Massachusetts Medicaid, for example, reimburses based on actual acquisition cost plus 25%, ensuring suppliers can provide safe, gum-based thickener choices.

Why This Change is Critical for Pediatric Care

• Patient Safety: A cost-based model prioritizes safe, effective thickeners, which are crucial for pediatric patients.
• Equity in Care: This change would ensure all children have equitable access to the best thickener options, regardless of socioeconomic status.
• Improved Health Outcomes: Consistent thickening improves swallowing safety, reduces hospitalizations, and decreases the need for feeding tubes, ultimately improving long-term health outcomes and reducing healthcare costs.

Next Steps: Moving Toward Reform

Policymakers and Medicaid administrators must recognize that weight-based reimbursement for thickeners is a barrier to safe pediatric care. To improve access, the following steps should be taken:

1. Recognize that thickeners are a medical necessity in the dysphagia community with demonstrated improved health outcomes for patients.
2. Adopt a cost-based reimbursement model that reflects the true cost and efficacy of thickeners and shift away from the weight-based model that disproportionately favors cornstarch thickeners.
3. Ensure equitable access to the safest thickener options for all pediatric patients, reducing health risks and financial burdens for families and healthcare providers.

What You Can Do: Advocate for Change

Improving thickener insurance coverage is a shared responsibility. Everyone—caregivers, healthcare providers, and advocates—can help push for better policies to ensure gum-based thickeners are accessible.

How to Get Involved:

1. Educate and Raise Awareness: Share your personal story or the stories of patients who have benefited from the use of gum-based thickeners. Talk about how lack of access to these thickeners has impacted you or the families you care for.
2. Leverage Your Voice: Use social media, conferences, or direct engagement to raise awareness.
3. Engage with Policymakers and Insurers: Advocate for cost-plus reimbursement models and patient choice when it comes to thickener selection. By directly engaging with policymakers and insurance providers, you can help influence the policies that determine which products are accessible to Medicaid recipients and those with private insurance.
4. Access Our Sample One-Pager to engage with policymakers: Download our one-pager sample to help with your advocacy efforts.
5. Utilize Evidence-Based Research: Provide clinical evidence that supports the safety and effectiveness of gum-based thickeners. The more data you can share that demonstrates the positive impact these thickeners have on pediatric dysphagia, the stronger the case will be for their broader coverage.

Financial Assistance: WeCare Program for Gelmix + Purathick

While we work to secure Medicaid coverage for thickeners, families can benefit from Parapharma Tech’s WeCare program, offering a 40% discount on Gelmix and Purathick thickeners, along with free shipping. Learn more and apply here: WeCare Program.