Anna Evangeline (she/her)

📍Probably outside
Hiking. Beaching. Chasing joy.

[Anna Evangeline (she/her) @sixhips]

Taking another extended Twitter hiatus. For consulting and advocacy-related inquiries, contact me via my website: https://t.co/BtUuK1KOox. Be well, all.

[Anna Evangeline (she/her) @sixhips]

An especially timely CMS update from my favorite health policy queen. I shouldn't need a new PA when switching jobs, plans, or providers. CC: @BCBSMA

[Kayla L. Amodeo,PhD @doc_amodeo]

BIG NEWS: CMS is finalizing that an approval granted through PA must be valid for as long as medically necessary to avoid disruptions in care in accordance with applicable coverage criteria, the patient’s medical history, and the treating provider’s recommendation.

[Anna Evangeline (she/her) @sixhips]

@Chantelle617 @BCBSMA If nothing else, at least @BCBSMA is consistent because this has been an issue every time I've been a member with them. I'm so sorry you know how exhausting getting meds approved is too.

[Anna Evangeline (she/her) @sixhips]

Here's a new fun fact I learned today after more than 30 yrs of living w/a chronic illness: by simply changing docs @BCBSMA requires a new prior auth for a drug they've already approved + I've been stable on for ~8 yrs while I'm already overdue for treatment and flaring. 1/

[Anna Evangeline (she/her) @sixhips]

@BCBSMA I don't know what else to say other than that in the last 30+ yrs @BCBSMA has cost me MONTHS of my life in treatment delays and lost productivity at work doing everything in their power not to pay for the treatments that my doctors have deemed best for me. I'm so exhausted. 8/8

[Anna Evangeline (she/her) @sixhips]

@BCBSMA It probably seems like I'm just screaming into the Twitter abyss right now but I want a public record of this before I go to my state reps, the press, and pull every other lever available to me to get access to my treatment in a timely manner 7/ CC: @BCBSMA

[X4 Pharmaceuticals @X4Pharma]

Check out Anna Ellis, our Associate Director of Patient Affairs & Advocacy, in this @PatientWorthy article, where she shares her insights on how to ensure that patients’ perspectives are included in drug development. Read more here: https://t.co/xT8837gyzk #RareDiseaseDay

[X4 Pharmaceuticals @X4Pharma]

Hear from our Associate Director of Patient Affairs & Advocacy, Anna Ellis, on her personal connection to the rare disease community and her commitment to ensuring that patients' voices are heard in drug development. #RareDiseaseDay

[Anna Evangeline (she/her) @sixhips]

In the last week @BCBSMA tripled my copay on one medication and denied another Rx I’ve been on for 8+ yrs citing dosing (they covered this dose for the ‘22 plan year) which I only found out at the time of refill. Y’all are exhausting.

[X4 Pharmaceuticals @X4Pharma]

The X4 team had a blast at the Boston @IDFCommunity Walk for PI this past weekend! We are so proud of this partnership and grateful for the opportunity to support the PI community.

[Anna Evangeline (she/her) @sixhips]

Looking forward to attending NORD's Breakthrough Summit and presenting my first-ever poster: "The “Living With Chronic Neutropenia” Survey: Experiences and Preferences of People Living With Chronic Neutropenia." #patientadvocacy

[X4 Pharmaceuticals @X4Pharma]

X4 will be attending this year’s @RareDiseases (NORD) Rare Diseases & Orphan Product Breakthrough Summit where we will highlight lessons learned from a recent patient survey on living with #ChronicNeutropenia. Check out the full schedule here: https://t.co/JirVyqBCjl

[Patient’s Right to Know 340B @340BPatients]

We're thrilled to have powerhouse advocates as faculty for our Advocacy Masterclass including @sixhips @tamikafelder @jennmcnary @CrzyCreoleMommy @BeingCharisBlog @hchang316 @LeilaniRGraham and @RarePOV! Apply now for the FALL 2022 course. https://t.co/SaWRDSzaxq

[Alicia C. Staley @stales]

@Medidata's new blog post explores the perspectives of #patientadvocacy experts @sixhips & @sreffey on how meaningful communication with patients can help #medicaldevice companies increase #clinicaltrial success rates. Read more: https://t.co/TyqSKINU1E

[Anna Evangeline (she/her) @sixhips]

ICYMI: check out the #rheum panel I moderated as part of the inaugural #Automimmune Summit in October! @AutoimmuneAssoc

[Autoimmune Association @AutoimmuneAssoc]

The #Rheum breakout at the #Autoimmune Summit featured powerhouse advocates and HCPs. The panels discussed the importance of setting boundaries, tips for condition management, clinical trials, and up and coming treatments. Tune in: https://t.co/igqEeyimld

[X4 Pharmaceuticals @X4Pharma]

Today, our Senior Manager of Patient Affairs and Advocacy Operations, Anna Legassie, will join other #PatientAdvocacy leaders at a @MassMEDICouncil webinar to discuss the importance of patient engagement to successful #ClinicalTrials. Register here: https://t.co/E8K5aM6lm3