Editor’s Note: The Doctor Visit—Your Mental Highwire Walk

Ever notice how a simple appointment can feel like stepping onto a tightrope? One moment, you’re hopeful: maybe the news will be good. The next, you’re bracing for bad news, juggling questions in your head, heart racing as you wait for the doctor to enter. Those sterile exam rooms can echo with anxiety—but they can also be a sanctuary of relief when your team listens, reassures, and validates every fear.

For many of us with CIDP, the doctor visit is about more than labs and treatment plans. It’s where hope is renewed, uncertainty is named, and connections are made. A warm greeting from your neurologist can ease months of worry; clear explanations can replace dread with purpose.

Remember: your voice matters every minute you’re in that chair. Write down your questions, bring a friend, ask for clarity until you have it. A good visit can fortify your mind for the battles ahead, but a bad one can weigh on your spirit for weeks. Let’s share our experiences and tips so every Texas CIDP patient leaves the exam room feeling heard, informed, and a little lighter on that tightrope.

Texas Medicaid Joins Revolutionary Gene Therapy Access Program

September brought game-changing news for Texas families affected by rare diseases: Texas Medicaid is now participating in the Cell and Gene Therapy Access Model, a federal program that guarantees access to breakthrough gene therapies through innovative payment structures.cms+1

The program initially covers sickle cell disease treatments, but federal officials indicate potential expansion to other rare conditions is on the horizon. For Central Texas families, this means life-saving gene therapies that previously cost millions of dollars are now accessible regardless of financial status.cms

How It Works: Instead of traditional payment models, participating states receive guaranteed discounts and rebates from manufacturers if therapies fail to deliver promised benefits. Texas joins 33 other states representing approximately 84% of Medicaid beneficiaries with qualifying conditions.cms

This breakthrough follows Texas Children's Hospital's successful deployment of the first FDA-approved gene therapy for AADC deficiency, where neurosurgeon Dr. Daniel Curry performed the groundbreaking procedure on a 3-year-old patient. The treatment involves directly injecting modified virus vectors into the brain's putamen area during minimally invasive surgery.texaschildrens+1

For our CIDP community, this development creates a pathway for future access to gene-based treatments currently in development. As researchers identify specific genetic markers and develop targeted therapies, the infrastructure for affordable access is already in place.

Learn more: Cell and Gene Therapy Access Model - CMS

Game-Changing Clinical Breakthroughs Hit Texas

The CIDP landscape transformed dramatically this September, with new targeted therapies showing unprecedented success rates in clinical trials accessible to Texas patients.

Riliprubart Revolution: This targeted complement inhibitor blocks the classical complement cascade while preserving infection-fighting capabilities. Phase 2 results show consistent efficacy across CIDP variants, with Dr. Claudia Sommer noting the "logical mechanism" finally delivering patient results.neurologylive

Individualized Treatment Era: Duke Health's Dr. Karissa Gable emphasizes the shift from traditional symptom control to "understanding disease activity at the molecular level". High-resolution nerve imaging and updated diagnostic criteria are improving patient classification, while subcutaneous immunoglobulin formulations offer flexible home-based treatment options.neurologylive

Current Texas Success Stories:

Treatment Comparison:

Financial Reality Check: With traditional IVIg costing $93,000 annually, new targeted therapies offer both improved outcomes and potential cost savings through reduced hospitalizations and complications.

CIDP Trials: Get In Now

Texas CIDP patients can access three breakthrough treatments—no traditional placebo periods.

CAPTIVATE (DNTH103): Everyone gets active drug from day one. Blocks nerve damage proteins. Ages 18-75. Enroll Now

ARISE Study: New or experienced patients welcome. Travel covered. Apply Here

Riliprubart Phase 3: Monthly shots replace monthly IVs. All care free. Details

Sites: Houston, Dallas, Austin, San Antonio. Find Your Site

Houston Gene Therapy Hits 10,000 Patients

Texas Children's 10,000th gene therapy patient proves Texas leads experimental treatments. Milestone

2025 Houston Symposium featured CAR-T for autoimmune conditions and muscular dystrophy breakthroughs. Conference Info

Houston Methodist runs parallel C5 inhibitor studies for myasthenia gravis. Research Programs

Access: Contact Texas Children's clinical trials office directly for experimental therapy evaluation.

$420K Gene Therapy for Ultra-Rare SNDC

Scottish Rite/UT Southwestern targeting 1-in-million Childhood-Onset Striatonigral Degeneration. First potential FDA treatment. Grant Details

San Antonio Family Impact: UT Health's Channeling Hope Foundation secured $800K for NALCN research after daughter's diagnosis. October 2025 conference launches natural history studies. Foundation Story

Texas Advantage: World-class research meets determined families = treatments for conditions affecting <100 people worldwide.

October NALCN International Conference in San Antonio - Launching natural history studies for ultra-rare genetic conditions

MDA Conference Results - Latest findings from Dallas muscular dystrophy research gathering

Texas Epilepsy Breakthrough Updates - Precision medicine advances for genetic epilepsies

Holiday Treatment Planning - Managing rare disease care during family travel season

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