Cecilia Aguirre-Crow

ALS Warrior, fighting for expedited treatment

[Shah Minokadeh, M.D. @MinoShah]

12/12 @US_FDA @FDACBER @SecKennedy @DrMakaryFDA @VPrasadMDPH: Please don't let this be another broken promise.

Grant accelerated approval for NurOwn NOW—with Phase 4 confirmation, biorepository, & natural history database.

People are dying daily. We can't wait.

178 days after our July 2025 petition (Docket FDA-2025-P-2109), just 2 days from the FDA's 180-day response deadline on Dec 30, silence looms. This could mean tens of thousands more deaths—including mine. #AcceleratedApproval4NurOwn #EndALS156YearsOfHopelessness #ALSHope #EndALS

@realDonaldTrump @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

11/12 ...when senators Murkowski & Collins asked you about using Accelerated Approval for ALS patients facing a “very, very limited time frame” with “no hope of survival,” you committed to flexible pathways, common-sense reforms, and rare disease urgency.

That’s exactly NurOwn’s situation—significant NfL reductions (like tofersen), unprecedented EAP survival, slowed progression, real recoveries.

We’re at the 180-day mark on our Citizens' Petition (response due Dec 30). Please don’t let this become another broken promise. We’re counting on you. #AcceleratedApproval4NurOwn #ALSHope

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

10/12 @DrMakaryFDA @MartyMakary

Marty, I had no idea when we took this photo years ago at Johns Hopkins that you’d one day hold my life—& the lives of tens of thousands with ALS—in your hands as FDA Commissioner.

I want to believe you’ll do the right thing. Your confirmation hearing gave us hope...

@realDonaldTrump @SecKennedy @VPrasadMDMPH @FDACBER @RobertKennedyJr @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

9/12 •Citizens' Petition Signs of Promise (cont.):*

- Respiratory gains: 5-8 year delay in non-invasive ventilation need; halting progression in breathing-critical domain (biggest survival predictor).

This is the "totality of evidence" the FDA has NEVER fully reviewed under accelerated pathways—compelling enough for cancer-level urgency.

My Newsweek OpEd: https://t.co/WMoJOvfpWz

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

8/12 *Citizens' Petition Signs of Promise (cont.):*

- Real-world participant benefits: Many regained motor function, maintained respiratory independence years longer than expected; restored/improved breathing (e.g., reduced need for support); Stabilized/improved forced vital capacity;

- Neurologist-documented improvements in feel, function, & survival (e.g., from Mayo, UMass experts; Right to Try cases like Matt Bellina; decade-long RWE from 2011+ recipients)

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

7/12 *Citizens' Petition Signs of Promise (cont.):*

- Extended progression-free survival: Up to 17 months (or more) during/after treatment—far beyond expected.

- Up to 85% slowing of progression (from ≥1 ALSFRS-R point/month loss to ~0.15 points/month post-NurOwn).

- Greater NfL reductions/stabilization with extended dosing in EAP (larger/consistently beneficial vs. Phase 3; continued neuroprotection).

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

6/12 *Citizens' Petition Signs of Promise (new EAP/long-term RWE, real-world evidence):*

- Unprecedented survival: 100% 5-year survival from symptom onset in EAP cohort (n=10) vs. ~20% natural history (p~0.000335)

- Median tracheostomy-free survival ~7 years (range 5-8.5) vs. 2.5-3 years typical.

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

5/12 *Phase 3 Trial Signs of Promise (cont.):*

- Post-hoc analyses (accounting for floor effects/advanced patients): Significant slowing of functional decline on ALSFRS-R.

- Independent Harvard/Dana-Farber stats (Lee-Jen Wei): Supportive p-values (0.045, 0.021, 0.007, 0.005) across domains/time points.

- MANY trial participants reported real-world benefits: Halting of symptoms (fasciculations, cramping, clonus) within days; regained/stabilized function, strength, & breathing—corroborated by neurologist notes & unblinded reports.

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

4/12 *Phase 3 Trial Signs of Promise (cont.):*

- Statistically significant NfL reduction (~9.4-11% delta vs. placebo in adjusted models; p=0.037; linked to slower decline—same surrogate that got tofersen accelerated approval).

- In pre-specified less-advanced subgroup (baseline ALSFRS-R ≥35): Higher responder rates (34.6% vs. 15.6% placebo), ~2-point ALSFRS-R preservation (slower decline).

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

3/12 *Phase 3 Trial Signs of Promise:*

- Statistically significant increases in neurotrophic factors (e.g., VEGF) & reductions in neuroinflammatory/neurodegenerative biomarkers (e.g., MCP-1; robust changes only in NurOwn arm).

- 23 of 45 pre-specified CSF biomarkers with statistically significant changes (15 with p≤0.001), proving target engagement across neuroprotection, inflammation, & neurodegeneration pathways.

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

2/12 NurOwn showed REAL signs of promise in the Phase 3 trial (randomized, placebo-controlled).

Despite missing the known deeply flowed 12-point questionnaire primary endpoint overall (due to heterogeneity, floor effects, high placebo response), multiple signals emerged:

Tofersen (Qalsody), which was granted Accelerated Approval for 2% of ALS patients with the SOD1 mutation, lacking the significant biological heterogeneity observed in the #NUROWN trial, also missed this primary endpoint.
Despite this, Tofersen (Qalsody) data has now shown that some treated regained function & strength, previously not thought possible. (See below)

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

1/12 @DrMakaryFDA @SecKennedy @FDACBER, As one of the (cell therapy) NurOwn Citizens' Petitioners fighting for my life—and the lives of tens of thousands with 100% fatal #ALS—I'm terrified

For 156 years, this disease has killed everyone with ZERO treatments providing any hope of survival. Past FDA administrations promised hope, then delivered empty words & denials. We've heard vows again: @VPrasadMDPH "first sign of promise" for rare diseases, @RobertKennedyJr pushing flexibility for cell/gene therapies like cancer gets.

Yet 178 days after our July 2025 petition (Docket FDA-2025-P-2109), just 2 days from the FDA's 180-day response deadline on Dec 30, silence looms. This could mean tens of thousands more deaths—including mine. #AcceleratedApproval4NurOwn #EndALS156YearsOfHopelessness

@realDonaldTrump @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Andrea Pauls Backman (she/her) @AndreaBackman05]

This is horrible news for people with #ALS.

[Cecilia Aguirre-Crow @CeciCrow]

I was Diagnosed in 2017 with so many possibilities in the pipeline, which kept me hopeful. Now, my only hope is in God.

[Lorri Cavaliere @LorriCav]

My Daughter Deserves Better.
The national @alsassociation recently released its financials, and the numbers tell a truly painful story. While they paid top executives hundreds of thousands of dollars (one receiving $500,000 in salary!), they also laid off 40 employees and saw 15 of their 34 chapters break away to form ALS United. The @alsassociation should be fighting for patients and families, yet they seem more focused on protecting their own interests.
As a mother, I am heartbroken and outraged. My daughter and every person battling ALS deserves real leadership, real accountability, and real action. We don’t have time for inefficiency, bureaucracy, or misplaced priorities. Every dollar wasted is a dollar that could have gone toward research, care, and hope for families like mine.
We need a HELP—Help, Efficiency, Leadership, and Progress. My daughter deserves better.
#MyDaughterDeservesBetter #ALSAccountability #WeNeedHELP #ALS

https://t.co/L3clWpM62S

[Shah Minokadeh, M.D. @MinoShah]

#ALS IS NOT RARE & is becoming more common

People who have #ALS have been left to die without hope by the @FDACBER CRUEL regulatory RIGIDITY for a disease WITH NO SURVIVORS.

@MartyMakary @RobertKennedyJr @realDonaldTrump @elonmusk, We need your leadership to value #ALS lives by reviewing treatments like Nurown & applying the same regulatory flexibility as terminal cancer treatments.

Join us in urging a reevaluation of #Nurown.
#100PercentFatal #NurownWorks #EndALS #156YearsOfHopelessness

Since 1869, anyone who receives this HORRIFIC #ALS diagnosis can only witness the rapid destruction of their lives.

Our broken bodies & lack of Big Pharma allies don't allow us to fight for our lives in significant numbers like ACT-UP did for AIDS.

YOU OR YOUR LOVED ONE COULD BE NEXT.
The only way to provide hope for future generations is for you to fight on our behalf against a @US_FDA that reserves its regulatory flexibility for Big Pharma and has repeatedly shown that #ALS lives have little value at the #FDA.

@LeaderJohnThune @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepCardenas @RepDebDingell @RepMMM @SenatorWicker @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @RandPaul @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @DorisMatsui @RepDonBacon

[No More Excuses ALS Watchdogs! @als_now]

Spike the football a decade late all you want @alsassociation over something #NME members were yelling in 2019: #ALS progression could be HALTED. Not for 2% of all patients, but many! Explain why T-REGS was not pushed as hard as others despite $70M+ in your bank? #ALSBIAS #endals

[Sherry Quisenberry @sherryquis]

NOBODY should have to repeatedly battle their insurance company for medical coverage of any disease. PERIOD.

Do better! @BCBSAssociation @BCBSTX

#Qalsody #BCBS #ALS

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

This is great news for the #ALS community.
Thanks @SecretaryPete

#EndALS
#DisabilityRights

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

No 22 yr old with #ALS should die when a drug could help her live. It’s inhumane for BCBS-TX to deny coverage for @Biogen’s ASO #Qalsody.

1. BCBS-TX is denying coverage alleging “clinical benefit has not been established.” But Shelby’s medical records document her ACTUAL clinical benefit and reduction in bad #ALS biomarkers.

2. Only 2% of people with ALS have Shelby’s SOD1 mutation. Thus, there are less than 500 Americans with ALS today who could be prescribed Qalsody ... even fewer Texans … and even fewer BCBS-TX insureds. Thus, the cost of covering her life-sustaining therapy would be an infinitesimal blip on BCBS-TX’s profits.

3. From ALS symptom onset, the median trach-free lifespan is appx 2.5-3 years. But there are people who have been on Qalsody for over 7 yrs and they are still not trached. Shelby deserves this same chance.

4. @BCBSTX please identify the expertise that your staff MDs and claim reps have to opine about the efficacy and clinical benefit of Qalsody on people with SOD1-ALS?

Have they ever diagnosed or treated an ALS patient? Ever conducted a clinical trial? An ALS trial? Are they published in a peer-reviewed journal? Authored any ALS papers? Spoken at ALS conferences? What do they know about ALS genetics? ALS biomarkers? Do they know about the flaws in the COAs? Do they even know what a COA is? Can they explain what NfL is and how it correlates to ALS progression? Have they ever signed a death certificate for a patient with ALS?

Now compare their lack of expertise to the ALS and clinical trial expertise of Lead PI & neurologist Dr Timothy Miller of WashU. He testified at the FDA AdComm that he had never seen people with ALS improve in his 20+ yr career in ALS but he does see “remarkable” improvements in his patients in the Tofersen (now Qalsody) trial, OLE and EAP. Has anyone on your team listened to the AdComm testimony? Because if you did, you would have “actual knowledge” that Qalsody works.
https://t.co/KHnr1Mre7M

Dr Miller was the keynote speaker who also presented Qalsody data at the @alsone_official scientific conference. He told the crowd of neurologists that declines in biomarker neurofilament light resulted in a “substantial lowering of the neurodegenerative disease process.” Shelby’s NfL levels decreased substantially on Qalsody.
https://t.co/jGHLj4Z6eJ

Now compare your team’s lack of expertise to the ALS and clinical trial expertise of the PIs who authored the peer-reviewed publication in the @NEJM. This is a Who’s Who list of internationally renowned ALS researchers. They know Qalsody works.
https://t.co/jGHLj4Z6eJ

Unless your team’s expertise matches that of these neurologists, BCBS should not be supplanting your team's uninformed opinions for these experts’ opinions about efficacy in the trial and the clinical benefit to the patients these neurologists are treating in their ALS clinics. To do otherwise is tantamount to Bad Faith.

Please reconsider your position.

Your policy language and the actual evidence requires you to give Shelby coverage for Qalsody as long as her neurologist deems it medically necessary.

Thank you @statnews for publishing this editorial.

#EndALS
#neurotwitter #neurology #RareDiseases

@JohnCornyn @SenAmyKlobuchar @SenatorWicker
@RepTonyGonzales @CEHaddadNP

[Cecilia Aguirre-Crow @CeciCrow]

#GoDawgs

[ℍ𝕒𝕞𝕚𝕝𝕥𝕠𝕟⚡️ @HamDawg115]

How bout them DAWGS
#GoDawgs