Thread by @melissajhogan

THREAD FOLLOWS: If you didn’t get to read my article, I’m going to share the medically inappropriate #BCBSTN #Idursulfase #medicalpolicy and the denials we’ve received as part of that.
melissahogan.me/bcbs-tn-wants-…

Quick Primer on ultra #raredisease #HunterSyndrome: multi-system disease physically affecting bones, joints, liver, spleen, heart, airway, nervous system, auditory system causing progressive damage, function loss, pain, enlarged organs, carpal tunnel, hearing loss

2/3 of #HunterSyndrome patients also suffer cognitive impairment, behavioral challenges like combo ADHD/autism/OCD/SPD early in life. Some never learn to speak. Difficulty following basic commands, can’t follow sustained or complex requests.

Quick Primer on #Idursulfase: only FDA-approved treatment for #HunterSyndrome, shown to slow, halt, and even reverse physical symptoms. The earlier it is started, the greater prevention of disease damage. Clinicians all agree to start early.

#Idursulfase is dosed by weight, .5mg/kg label, so as weight increases, more drug. Administered generally via a 3-4 hour IV infusion in hospital, outpatient, or home nursing setting. Hospital setting is obviously most expensive.

My son started #Idursulfase in 2009 - hospital setting, weekly. After few yrs, home infusions, weekly. Majority of time covered by some BCBSTN plan. No pre-auth req or hurdles to access bc only approved drug for condition & proven beneficial.

#BCBSTN adopted new #Idursulfase #medicalpolicy in 12/16, 3 months after we selected new plan. I had confirmed no pre-auth or drug hurdles when I selected plan. Since that time, many denials and circles for us bc of new policy. bcbst.com/mpmanual/Idurs…

#BCBSTN #medicalpolicy now req pre-auth for #Idursulfase & only considers it medically appropriate in #HunterSyndrome patient who is 16 mos old or older. // Kids lucky to be dx’ed with ultra #raredisease early and now should watch damage until 16 mos? bcbst.com/mpmanual/Idurs…

To start #Idursulfase: #BCBSTN #medicalpolicy now req documented outcomes in a 6 minute walk test or percent predicted FVC (spirometry) // Children 16 mos can’t do that! Majority of #HunterSyndrome patients can’t do bc of cognitive effects! bcbst.com/mpmanual/Idurs…

And to continue #Idursulfase, #BCBSTN #medicalpolicy reqs improved outcomes in either of the same tests // 1) Degenerative disease so slowing deterioration or stabilization is a win, improvement over long time unlikely 2) Again, MOST patients CAN’T do those tests AT ALL

Granted, those markers were used in the early 2000's pivotal clinical trial for #Idursulfase but that only included non-cognitively impaired patients, the minority. And insanity for #BCBSTN to expect continued improvement over time in a degenerative disease. And-over 12 yrs ago.

[Vote with LIKES] So… (1) Was the #BCBSTN #Idursulfase #medicalpolicy adopted as a cost saving measure? To deny some patients, some doses, end drug early in their already shortened lives, take advantage of parents and less sophisticated docs/systems who may not fight it?

[Vote with LIKES] Or… (2) Was the #BCBSTN #Idursulfase #medicalpolicy adopted because no one read any post-2006 medical literature in a #raredisease that clearly no one at BCBSTN had any expertise in --> READ: ncbi.nlm.nih.gov/pmc/?term=%22h…

Based on that #BCBSTN #Idursulfase #Elaprase #medicalpolicy for #HunterSyndrome, here are the various denials and/or limitations that we’ve received between January 2017 and June 2018:

January 2017: Benefits cannot be provided because there was no authorization and/or referral for this service. #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

March 2017: Benefits cannot be provided because there was no authorization and/or referral for this service. #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

March 2017: These services were disallowed by Utilization Management. #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

March 2017: Benefits cannot be provided for this service because the required authorization is not on file. (this 3rd determination of the claim WAS MADE IN JULY 2018) #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

April 2017: Benefits cannot be provided because there was no authorization and/or referral for this service. #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

April 2017: These services were disallowed by Utilization Management. #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

April 2017: Benefits cannot be provided for this service because the required authorization is not on file. (this 3rd determination of the claim WAS MADE IN JULY 2018) #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

May 2017: Benefits cannot be provided because there was no authorization and/or referral for this service.
May 2017: These services were disallowed by Utilization Management. #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

May 2017: Benefits cannot be provided for this service because the required authorization is not on file. (this 3rd determination of the claim WAS MADE IN JULY 2018) #BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

April 2018: These services were limited by a Utilization Management authorization.
#BCBSTN #Idursulfase #Elaprase #medicalpolicy #HunterSyndrome

May AND June 2018: The number of services exceeds the number approved in the Utilization Management authorization. This decision is based on BCBST clinical criteria and/or medical policy as well as the terms of evidence of coverage or member handbook. #BCBSTN #Idursulfase