Olivia
Online
MelodicMind
@MelodicMind09
Immune compromised, covid cautious, neuroscience Ph.D., singer, musician
United States
Joined May 2009
1.2K Following
906 Followers
1.2K Posts
@tkmiles I just finished! A bit late, but waiting for the infamous 8th. I do hope we get a third novel! Until then…
It's widely accepted that hantavirus transmits from rodent excreta to humans via inhalation of aerosolized virus, so I don't understand why we're so reluctant to acknowledge the inhalation route for human-to-human transmission.
https://t.co/aGFDKS94Qk
He had to be detained *forcibly*.
This is not going to go well, is it.
The original sin of the Covid pandemic was not acknowledging airborne spread early, despite SARS1 having been airborne (we learned the hard way in Toronto in 2003). It looks like some are finally realizing this, however belatedly and despite the WHO once again trying to downplay it initially with this 'intimate contact' nonsense.
Two cases tested positive yesterday from the cruise ship passengers, and this is despite isolation on the ship itself. The 2019 NEJM study on Hantavirus also suggests that this thing might be airborne.
If countries don't employ airborne precautions such as isolation of these cases with use of N95/FFP2 and HEPA filtration in quarantine centers, then we are just inviting this thing to spread.
Nip it in the bud now.
Say it “Andes virus”. This is a form of hantavirus BUT it spreads in the air AIRBORNE potentially after only BRIEF CONTACT. This is much different then needing to be in contact with mice feces or in close contact with a person for a prolonged period of time ‼️
Here is a description of ANDES virus from a 2020 study that I posted earlier and below:
The researchers were able to show that the first patient, a 68-year-old man who attended a birthday party with about 100 other people, infected someone else after being in contact with them for only a few moments, on the way to the restroom.
Through careful investigative work, scientists determined that the first patient in Epuyen attended a birthday party on November 3, 2018, the same day he ran a fever.
During the 90 minutes he was at the party, he infected five others, including two people sitting roughly a foot from him at the same table and two people who were sitting roughly 4 feet away from him at neighboring tables. The fifth person to catch the virus crossed paths with the patient only briefly on their way to the restroom.
Although all five patients were exposed at the November 3 birthday party, they didn’t start to show symptoms for another two to three weeks.
The second patient in the outbreak, a 61-year-old man described as having an active social life, infected six others before he died, 16 days after first showing symptoms.
https://t.co/A4htEQhZyr
After a slight delay.. our new article:
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID
Is here: https://t.co/uIO8cHybzH
@interesting_aIl Why is this accurate though lol
Update on my Humira appeal
Humira was denied a second time after a DAW or “dispense as written” appeal was sent—not because it stopped working, not because it’s unsafe for me, but because biosimilars are on the market. Every 2026 marketplace plan available to me has dropped Humira from their formulary. I have missed 6 doses to date and am actively flaring.
Even with my documented history of severe allergic reactions to other biologics, I’m being told I must “try and fail” a biosimilar (Simlandi) before they’ll even consider covering the medication that has already proven effective for me. My doctor has said my biologic allergy history makes this “try and fail” approach to Simlandi too risky. My tongue swelled on Tremfya. Does that mean my throat has to swell or I stop breathing while testing Simlandi before anyone listens?
So here I am again: no medication, escalating fear and pain, and the same exhausting cycle—endless calls, long holds, automated denial texts, and zero clarity while my health hangs in the balance all because Humira has been deemed “not medically necessary” by a board-certified physician hired by @AnthemBCBS. A physician who has never examined me or viewed my records. A physician who does not know that I spend 60-70% of my day working remotely from bed. My spine and hip pain are worsening (which means my sacroiliac joint is being damaged. FYI this leads joint fusion or hip replacement surgery. Are you going to pay for that @AnthemBCBS?), scalp psoriasis is back, and I have new psoriatic lesions on my torso and in my groin. It won’t be long before my legs and arms are covered and my infection risk dramatically increases again.
What makes this harder is that the usual support systems are disappearing. Patient advocate programs have been scaled back or dissolved. I have no help and spend 4-6 hours a day trying to fight to gain access to Humira. Bridge programs may exist, but patients like me are often told we’re not eligible once a biosimilar is suggested—even when we’re in the middle of appeals and going without medication.
Yes, biologics are expensive. But forcing patients into “try and fail” protocols—especially those with complex histories and documented severe reactions—is not healthcare. It’s a business decision with life-altering consequences.
If you’ve ever fought for care, appealed denials, or had your health treated like a line item, you’re not alone. And if you work in healthcare, policy, insurance, or patient advocacy—please hear us: this system is harming people.
We need change. Patients shouldn’t have to collapse before they’re allowed the medication that keeps them functioning.
@muniraforohio @mcuban @costplusdrugs @bonespower @ewarren @Liston4Ohio @SteveHuffmanOH @DrTerryAJohnson @abbvie
Inspired by @nikxbox360beast here is my addition to his “Statement to the General Public”
2019-2022: I was without Humira for 7.5 months or 15 missed doses. The result? A severe flare that stole my mobility, left me bed-bound, and robbed me of my independence. I developed bilateral leg infections and could no longer work in my hands-on job but continued remotely and my career path was forever changed.
When the pandemic hit, I hoped for a chance to heal at home, but my reality was far from hopeful. This is where my battle truly began.
For context: I moved for a new job, but my prior preauthorization was denied in my new state with 3 refills left. Denied again and again, I waited 8 months before starting Taltz, only to suffer a severe allergic reaction that caused my eyes, lips, and tongue to swell. My healthcare team was baffled: such allergies occur in only 0.1% of users. Next came Tremfya, but I was severely allergic to that, as well. After multiple ER trips, I was told to stop all biologics for at least 2 months and seek an allergist while still flaring and alone. By July 2020, I sadly admit I was suicidal. The system left me hopeless: doctors tried, but insurance handcuffed their options. I finally started Enbrel and, thankfully, wasn’t allergic. My symptoms improved just enough for me to be mobile again.
2022-2024: I stayed on Enbrel, but my conditions slowly worsened and the drug’s effects faded. I celebrated simple victories: showering, wearing jeans without tearing my skin, chopping food, bending, even rolling over in bed pain-free. These basics had been impossible for years. Still, I missed my old quality of life on Humira and worried that, after so long, my body would reject it. I asked my care team to test for autoantibodies. Thankfully, I was still eligible, and in 2025, I restarted Humira.
This last year I have recovered so much! My conditions are controlled, no longer progressing. After six long years, I feel like myself again.
Until now... I’m denied Humira again. This time, because biosimilars are available after the 2023 patent lift. Every 2026 marketplace insurance plan available has dropped Humira to protect their profits. I warned my care team in November 2025, but they couldn’t appeal until January 2026. I still don’t have medication. Despite my history of severe allergic reactions, I’m told I must “try and fail” Simlandi before they’ll consider Humira. My doctors are fighting back, but I’m mostly left in the dark, getting automated denial texts from Tandem RX, my doctor’s new AI system.
The cycle begins again: endless calls, long holds, disconnected lines. Anyone with a chronic illness in the US knows this nightmare. Hours on the phone with @Abbvie and my insurer @AnthemBlueCross only to hear Humira is “partially approved” BUT only after Simlandi fails. My doctor now has to go “toe-to-toe” with the insurance company.
Meanwhile, I sit here without Humira, fearing another flare. I refuse to lose myself a second time to this broken, profit-driven healthcare system. After nearly six years of struggle, I just got my life back. Now, I’m terrified it will all be ripped away again.
1/2 🧵
Statement to the General Public:
I have been on Humira for over 14 years to manage my rheumatoid arthritis. Since taking over my healthcare responsibilities when my mother became ill, I have experienced ongoing and significant issues with Humira, Express Scripts (the pharmacy benefit manager), and AbbVie.
Every month, I spend two to five hours on extremely frustrating phone calls, often speaking with representatives who provide generic responses and offer little to no real solutions. These conversations frequently leave me feeling dismissed and talked down to. Meanwhile, I am the one who must inject this medication into my body. It is unacceptable that decisions about my treatment are treated as routine administrative matters rather than serious medical concerns.
I am not comfortable simply switching medications due to behind-the-scenes negotiations between pharmaceutical companies and insurance providers. Patients should not feel like pawns in financial agreements or corporate decision-making. Healthcare decisions should be based on medical necessity and patient well-being — not on contracts, lobbying efforts, or profit margins.
It is deeply troubling that individuals who are not medical professionals often play a significant role in approving or denying medications. Even more concerning is the inconsistency in coverage decisions from year to year. When access to necessary treatment changes without clear medical reasoning, it erodes trust in the system.
I am exhausted from feeling at the mercy of insurance companies and large healthcare corporations. Patients deserve transparency, respect, and care that prioritizes their health over corporate interests.
If anyone has constructive ideas on how we can advocate for meaningful, positive change within our healthcare system, I welcome your thoughts. It is time to demand accountability and work toward a system that truly serves patients.
@humira
@abbvie
@ExpressScripts
Express Scripts Pharmacy
They KNEW that N95 respirators were required to stop the spread of Sars1 in 2003 and Sars2 in 2020, yet heathcare workers were not provided with enough of them and the public is still being told to wash their hands instead of wearing a respirator mask. 😷
COVlD research is close to blacklisted at this point. We've had grant applications triaged (hundreds of hours of work flushed down the toilet), and others get just absolutely ludicrous reviews because you have to convince unmasked Covid-uninformed people to take Covid research seriously. NIH has Covid on their "banned word" list. A lot of people have 2019 pre-pandemic projects now coming to an end (self included). Others are gaining non-Covid research funding to keep staff from being laid off, often with the hope of adding a Covid component to the work, or getting additional funding to add on to it substantially or run separate Covid studies.
Anyway, I am aggravated by the situation too, but know a lot of researchers would like to be doing more research-wise than they are able to. It's the funders / general societal views blocking everything. Just sharing my perspective. Can't speak for others. Open to feedback.
Hey Mark, I’ve been stuck in the appeal process because of a patent lift and @AnthemBlueCross formulary change. Humira isn’t covered now but I have a severe allergy to many biologics. Doctor doesn’t want me to switch. I’ve been without meds for 3 months. This is what life looks like when I miss doses 👇🏻
Please help us! It’s a fight every year.
Hey Mark, I’ve been stuck in the appeal process because of a patent lift and @AnthemBlueCross formulary change. Humira isn’t covered now but I have a severe allergy to many biologics. Doctor doesn’t want me to switch. I’ve been without meds for 3 months. This is what life looks like when I miss doses 👇🏻
Please help us! It’s a fight every year.
Normally, patients would have “Patient Care Advocates” for this situation, but Abbvie dissolved that program last fall. Additionally, bridge programs might be available, and, to my understanding, @Abbvie may provide Humira when there is a lapse in medication due to appeal issues, out-of-state moves, loss of insurance or job, etc. Sadly, I am told that I am not eligible because biosimilars are being suggested. Which I interpret as “Abbvie controlled the market for so long and Alvotech/Teva Pharmaceuticals want their money for Simlandi.” Therefore, AbbVie can’t enroll me in a bridge program, as it could be viewed as inhibiting a competitor’s ability to make a profit.
I know biologics are expensive. Humira costs $7,000 to $11,000 per month, Simlandi $950 to $1,200. I’m frustrated and helpless. Every year, patients are caught between profit margins and business decisions, while doctors’ hands are tied. This must change.
So let’s finally have a conversation together and try to change this for myself, @nikxbox360beast, and many others using biologic medications.
@mcuban
@costplusdrugs
@PAN_Foundation
@CureArthritis
@NPF
@psoriasis_hub
Anybody have a guess what happened in 2020❓ Could it be a virus that causes long term disability and death ❓ Covid is NOT over. EVERY INFECTION increases your risk for #LongCovid ‼️😷@acrossthemersey @michael_hoerger @1goodtern @HarrySpoelstra @DavidJoffe64 @DrEricDing 👇
@kwuchu @AnthemBCBS Clearly this is an issue when profits are at risk. The disease being treated doesn’t matter if the treatment costs too much.
I’m sorry you are going through this, too. I hope your sister gets the treatment she needs to recover!
Inspired by @nikxbox360beast here is my addition to his “Statement to the General Public”
2019-2022: I was without Humira for 7.5 months or 15 missed doses. The result? A severe flare that stole my mobility, left me bed-bound, and robbed me of my independence. I developed bilateral leg infections and could no longer work in my hands-on job but continued remotely and my career path was forever changed.
When the pandemic hit, I hoped for a chance to heal at home, but my reality was far from hopeful. This is where my battle truly began.
For context: I moved for a new job, but my prior preauthorization was denied in my new state with 3 refills left. Denied again and again, I waited 8 months before starting Taltz, only to suffer a severe allergic reaction that caused my eyes, lips, and tongue to swell. My healthcare team was baffled: such allergies occur in only 0.1% of users. Next came Tremfya, but I was severely allergic to that, as well. After multiple ER trips, I was told to stop all biologics for at least 2 months and seek an allergist while still flaring and alone. By July 2020, I sadly admit I was suicidal. The system left me hopeless: doctors tried, but insurance handcuffed their options. I finally started Enbrel and, thankfully, wasn’t allergic. My symptoms improved just enough for me to be mobile again.
2022-2024: I stayed on Enbrel, but my conditions slowly worsened and the drug’s effects faded. I celebrated simple victories: showering, wearing jeans without tearing my skin, chopping food, bending, even rolling over in bed pain-free. These basics had been impossible for years. Still, I missed my old quality of life on Humira and worried that, after so long, my body would reject it. I asked my care team to test for autoantibodies. Thankfully, I was still eligible, and in 2025, I restarted Humira.
This last year I have recovered so much! My conditions are controlled, no longer progressing. After six long years, I feel like myself again.
Until now... I’m denied Humira again. This time, because biosimilars are available after the 2023 patent lift. Every 2026 marketplace insurance plan available has dropped Humira to protect their profits. I warned my care team in November 2025, but they couldn’t appeal until January 2026. I still don’t have medication. Despite my history of severe allergic reactions, I’m told I must “try and fail” Simlandi before they’ll consider Humira. My doctors are fighting back, but I’m mostly left in the dark, getting automated denial texts from Tandem RX, my doctor’s new AI system.
The cycle begins again: endless calls, long holds, disconnected lines. Anyone with a chronic illness in the US knows this nightmare. Hours on the phone with @Abbvie and my insurer @AnthemBlueCross only to hear Humira is “partially approved” BUT only after Simlandi fails. My doctor now has to go “toe-to-toe” with the insurance company.
Meanwhile, I sit here without Humira, fearing another flare. I refuse to lose myself a second time to this broken, profit-driven healthcare system. After nearly six years of struggle, I just got my life back. Now, I’m terrified it will all be ripped away again.
1/2 🧵
I just found out that @AnthemBCBS is denying my little sister's 2nd CAR T-cell therapy for her cancer, saying that they only do one per patient per lifetime. Yet, this is the only treatment option available to her given that she's had a bone marrow transplant and a different version of CAR T-cell therapy, but given the cost of the procedure, they would rather deny it and save themselves money versus giving her life-saving treatment.
Something is severely broken in our healthcare system if we pay for it and the health insurance companies can make purely financial decisions for denying treatment, especially for cancer patients. Her doctors have appealed TWICE and been denied, is there anybody at @AnthemBCBS that can help get approval for her CAR-T treatment?
Normally, patients would have “Patient Care Advocates” for this situation, but Abbvie dissolved that program last fall. Additionally, bridge programs might be available, and, to my understanding, @Abbvie may provide Humira when there is a lapse in medication due to appeal issues, out-of-state moves, loss of insurance or job, etc. Sadly, I am told that I am not eligible because biosimilars are being suggested. Which I interpret as “Abbvie controlled the market for so long and Alvotech/Teva Pharmaceuticals want their money for Simlandi.” Therefore, AbbVie can’t enroll me in a bridge program, as it could be viewed as inhibiting a competitor’s ability to make a profit.
I know biologics are expensive. Humira costs $7,000 to $11,000 per month, Simlandi $950 to $1,200. I’m frustrated and helpless. Every year, patients are caught between profit margins and business decisions, while doctors’ hands are tied. This must change.
So let’s finally have a conversation together and try to change this for myself, @nikxbox360beast, and many others using biologic medications.
@mcuban
@costplusdrugs
@PAN_Foundation
@CureArthritis
@NPF
@psoriasis_hub
@nikxbox360beast Hi Nicholas, I am experiencing significant issues and have been on Humira for 11 years. I spent many hours on the phone with @abbvie just yesterday. I am without medication and stuck in an appeals process. Which can take months! Will comment more soon. You have my sympathies
Is 2026 the year people see that airborne illness and spread can be prevented?
Thank you for deciding to mask again!
#covidisnotover
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