ALS News Today Forums Forums Living With ALS If I could transform healthcare organizations. I’d change…

  • If I could transform healthcare organizations. I’d change…

    Posted by Dagmar on March 30, 2022 at 7:13 pm

    Who hasn’t gotten lost in healthcare’s layers of bureaucracy? Or, wondered why childproof medication caps are used for pill bottles issued to ALS patients?

    I wrote about my experiences in my recent column, “Who is Protecting Whom?” https://alsnewstoday.com/columns/2022/03/29/supposed-protections-harm-rare-disease-patients/
    The incident left me wondering, who is the customer here?

    It also inspired me to dream – – if I could transform healthcare organizations, I’d change…

    My 3 wishes?
    1. Ban childproof bottle caps for seniors and pALS.
    2. Have the computer programs between health insurance, pharmacies, and doctor’s offices all be able to “talk” to each other.
    3. When calling Medicare or health insurance and having to answer a long list of questions, why can’t I say a secret password, just like when I sign into my online account.

    What are your 3 wishes? (if you could transform healthcare)

    Kerry Penn replied 2 years ago 2 Members · 2 Replies
  • 2 Replies
  • Dagmar

    Member
    March 31, 2022 at 3:38 pm

    Reading through the comments I am getting on the article’s site, many of us are frustrated with having to deal with healthcare organizations.

    https://alsnewstoday.com/columns/2022/03/29/supposed-protections-harm-rare-disease-patients/

    I’ll take advantage of this lull in the conversation 😉 to add 3 more wishes:

    1. When calling a healthcare organization, a human answers the phone – – not an automated answering service.
    2. When the doctor orders or prescribes something, Medicare cannot deny it – – unless they were there at the appointment with us and the doctor.
    3. Enough with the constant “reminder texts” from the pharmacy!

  • Kerry Penn

    Member
    April 1, 2022 at 8:55 am

    Our insurance provider has an online pharmacy which we are required to use for ongoing medications. It is great except the only way to contact them is by phone or US mail. Since speaking via the phone is no longer an option for me, it sure would be nice to be able to contact them by email. I know that my husband, who is my caregiver, can make a call, I still would like to be able to handle as much as I can for as long as I can.

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