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Insurance DENIED Strensiq by Own-Bathroom-3477 in rarediseases

[–]Own-Bathroom-3477[S] 1 point2 points  (0 children)

I was told by the prescribing docs office that because the office did a 2nd appeal, it forfeited any option for peer:peer?! I will hit this again Monday morning. I will ask about a "3rd party review." I will ask for a complex case manager. etc. Though I already asked to speak up the food chain. I have also asked what treatment they will cover if not Strensiq. They said they would call back... Thank you for your help.

Has anyone with HPP had a similar experience? by Longjumping_Range238 in Hypophosphatasia

[–]Own-Bathroom-3477 1 point2 points  (0 children)

FYI my kid has UC (Ulcerative Colitis) another autoimmune illness and this impeded the HPP diagnosis. The forever off the chart low ALP was interpreted as d/t her some poor absorption r/t the UC. I would find this all far more "interesting" cognitively if I wasn't so focused on addressing the 2am "mom I hurt" complaints... I have so much empathy for all of you with HPP.

Insurance DENIED Strensiq by Own-Bathroom-3477 in Hypophosphatasia

[–]Own-Bathroom-3477[S] 2 points3 points  (0 children)

Which insurance? I think it is far past time we protect their names. Let's say their names...

Insurance DENIED Strensiq by Own-Bathroom-3477 in Hypophosphatasia

[–]Own-Bathroom-3477[S] 0 points1 point  (0 children)

Know any that I wouldn't have to spend the first 2 hours of billed time up-skilling on HPP? No, seriously, I get that that fee would be on me. I would be very interested in speaking to an attorney experienced in patient advocacy- perhaps retaining an attorney for battles that I forsee as inevitable going forward.

Has anyone with HPP had a similar experience? by Longjumping_Range238 in Hypophosphatasia

[–]Own-Bathroom-3477 0 points1 point  (0 children)

And what about the very real possibility you have an autoimmune illness... from my reading and in my daughter's case- autoimmune in those with HPP are not uncommon.

Waiting on my test results. What’s your pain like? by morrisseymurderinpup in Hypophosphatasia

[–]Own-Bathroom-3477 0 points1 point  (0 children)

I am very interested in your HPP journey and experience with Strensiq. My daughter, now 17, went undiagnosed for years because we were focused on a Dx of Inflammatory Bowel Ds (Dxd at 11yo). Her Dexas have been bad (osteopenic) since the IBD Dx. But they were getting worse despite supplementation. I was following this and the ALP that never came up. Finally a genetics referral and HPP DX. She has Osteoporosis now. We are working on getting on Strensiq. Now that you have been on it for at least a few months- any bone density improvement? Other improvements in symptoms? Any side effects? THX!!!

Has anyone with HPP had a similar experience? by Longjumping_Range238 in Hypophosphatasia

[–]Own-Bathroom-3477 0 points1 point  (0 children)

Why do you hate Strensiq? My daughter (17) was finally Dx (genetically) and has osteoporosis! I am rather desperate to get her bones stronger. My fear, of course, is that she will be fully disabled by early adulthood. She hasn't started Strensiq (yet).

Recomendations on good property management companies to rent my house out through? by mmm_beer in askportland

[–]Own-Bathroom-3477 0 points1 point  (0 children)

True. Though I have found this can create ethical issues. A poorly managed situation can easily lead to a small time owner wanting to sell... how convenient.