100% Remission v. 100% Disability
Donation protected
Abby’s Battle
On June 28, 2015, while at Chicago’s Pride Parade, my daughter Abby (above ) collapsed due to sudden, severe, debilitating head pain. A flurry of ER visits, consults with specialists, and hospitalizations followed. The pain persisted, then worsened. Nothing provided more than minimal relief. Most of the time, her pain was 10 on a scale of a 10. When hospitalized, it sometimes dropped briefly in response to intravenous medication; more often; it did not—but learning things like biofeedback while in an environment with others who understood was helpful for coping with the unremitting pain.
Diagnosis was elusive, and doctors disagreed. Because she had dramatic—but short-lived—response to a particular drug and some elevation of the pressure in the fluid surrounding her brain and spinal cord, it was speculated that she had a condition known as pseudotumor cerebri. As its name suggests, this disorder mimics a brain tumor, which causes pain by increasing pressure in the skull. (And thank God for that lack of tumor!)
Treatment for pseudotumor cerebri was begun-—and continues today.
But there was more—and no one seemed to know what that might be. The pseudotumor treatment provided a bizarre sort of relief; while providing a sensation of pressure release, it seemed to almost make way for pain of a different nature to break through. We’ve since learned that many have similarly complex, multifactorial headaches requiring different modes of treatment—but it was scary to see her so ill when ostensibly, the problem had been diagnosed and was being treated.
As anyone who’s struggled with unresponsive, unremitting pain know, it’s often difficult to be taken seriously by the medical community. Even among specialists, there’s often an impatience with those who don’t get better. Worse, Abby’s doctors disagreed about diagnosis, leaving her to coddle conflicting egos, even as she struggled to learn what was wrong with her and—more importantly—what could be done to make it go away.
I knew from my own experience as a pain patient that passivity wouldn’t get her anywhere—the right diagnosis leads to the right treatment, and while getting there can be frustrating, sometimes the solution is pretty straightforward. I encouraged her to go to both Chicago’s Diamond Headache Clinic, where a diagnosis of complex migraine was made, and —because their treatment regimen didn’t bring remission —to the Mayo Clinic in Rochester, MN for a second opinion. At Mayo, the diagnosis of complex migraine was confirmed. Abby is now being treated for both pseudotumor cerebri and complex migraine.
Because dizziness/vertigo and falling were a concern, Mayo also provided physical therapy focusing on body mechanics and safety. Discharged back to Diamond’s care, Abby remained the sort of frustrating patient most doctors dread—nothing worked!
And then, about 7 months ago, Aimovig was introduced to her medical regimen.
This drug is a miracle. It took a couple of months and a dosage adjustment, but like magic, it erased all migraine pain. Abby has now gone more than 230 days without migraine! Aside from having a handful of days after her monthly injection, during which she feels as though she’s been given a massive dose of chemotherapy (she has!), she feels great. She is the poster child for Aimovig success. Now she can reclaim her life!
But the miracle comes with a hefty price tag. Between the time she fell ill in June, 2015 and August, 2018, many uncovered medical expenses accrued. These include:
* MOST importantly, for the short term, at least, the cost of Aimovig. This drug is responsible for Abby’s complete remission. Other meds treat specific problems, such as low potassium. But Aimovig is the real magic bullet. Initially, this campaign listed the cost as almost $700/month, pending a Medicaid appeal that *might* reduce it to a lower copayment, if not cover it fully. In fact, that was the amount Abby was short, last month. Each syringe—of which she now takes 2 each month–costs over $600; the cost of the drug to retail customers—discounted by GoodRx (use this—it’s great!) is $1208/month. The discount programs available to reduce the drug’s cost (very perversely) apply only to those who already have commercial insurance coverage; because she is on Medicaid, Abby does not qualify.
With Aimovig, Abby is a fully-functioning, healthy adult able to care for herself and—most importantly—return to work (and get the insurance to pay for the medication). Without it, she is 100% disabled. She’s bedridden, unable to tolerate light or sound. She becomes a prisoner of a dark room, eye mask, and noise-blocking headphones—and her pain remains at a level of 10 on a scale of 10. The difference is as dramatic as the difference between night and day. The importance of this drug cannot be overemphasized.
* Many ER copayments; until it became evident that the medical chestnut about seeking immediate care whenever you experience “your worst headache ever” brought no results, we heeded the advice, paying many out-of-pocket copayments.
* All visits to Diamond Headache Clinic. When BCBS coverage was extended by astronomically-expensive COBRA, this was in the amount of a standard copayment; now, the full $300+ visit fee is paid out-of-pocket, as the Clinic does not accept Medicaid or reduce fees for uninsured patients paying cash.
* All phone consults with Diamond (a more cost-effective way to get med refills or quick questions answered than an office visit).
* $5000, out-of-pocket—over & above other uninsured charges and/or copayments—paid to Diamond Headache Clinic for her inpatient care.
* Payment for nonformulary medications. Of the 15 prescriptions Abby currently takes, several that cannot yet be phased out are not covered by Medicaid.
* Transportation to and lodging at the Mayo Clinic.
*Copayment and uncovered medical expenses for diagnosis and treatment at the Mayo Clinic. (At the time, she was still covered by BCBS and has conventional bills.)
*Loss of income; when her contract with the Veterans Administration expired in late 2017, Abby was too ill to seek another job. She first received unemployment benefits, then was approved for full disability benefits about a year ago. Her income has been slashed, while her expenses have increased drastically due to the cost of medical care.
*Complete depletion of all savings–for all of us; this includes liquidating all assets of any value other than my (used) car, needed to get to work.
*Loss of my son’s income. Preston’s job ended just as I began my current job. He took over being home with Abby when I was not. (Dizziness and falls were a huge concern; she could not be alone for long). Becoming a caregiver required huge sacrifice from him.
* The cost of supporting three adults on one income. Typically, my two “roommates” contribute to the household, but Abby became too ill, and Preston became a caretaker. At a time when the nest is typically emptying, we found ourselves signing a lease for an apartment large enough for all of us. As Abby rebounds, this arrangement works well on every level other than financial, which all falls to me.
BUT, WAIT!! ABBY’S IN REMISSION!
Keeping Abby pain-free is absolutely the priority. While it would be great to recoup some of the losses incurred during the 3+ years she’s been ill, the really pressing concern is ensuring Abby continues to get Aimovig until it is covered by insurance. In that way, my brilliant, beautiful daughter can begin the process of getting her life back on track—as can her equally-deserving brother, who’s very sadly fallen through the cracks.
Abby’s using every resource available to her to find a job in her field, while remaining open to jobs in other arenas to tide her over. Preston is looking for a job, too. And I take every freelance writing, babysitting, dog sitting, housecleaning, and meal prep job I can cobble together. I even donate plasma twice a week for the little bit of cash it brings.
I’d give almost anything NOT to be on Go Fund Me asking for help. We’ve already had so much help from friends and family. Their generosity has meant the world to us, and we haven’t forgotten them (or the need to repay what they’ve lent us. Things just went from bad to worse—and then to WORST)—for a while).
Now that Abby’s in remission, she can move forward constructively. And me? It may have taken me decades to learn how to ask for help, but I’ve learned the very humbling lesson that sometimes, things are simply beyond our control—and those who can help often want to do so.
$5000 will allow us to continue to pay for Aimovig until we get a decision about its coverage. If the decision comes quickly, it may also also help defray the other listed costs—including doctor visits, doctor phone consultations, and many other medications.
It will, in short, keep Abby migraine-free until she has a job with insurance coverage for these things—sparing her a return to horrible, unremitting pain.
Soon, we’ll need to order the next dose of Aimovig. Can you please help Abby have another month without disabling pain?
On June 28, 2015, while at Chicago’s Pride Parade, my daughter Abby (above ) collapsed due to sudden, severe, debilitating head pain. A flurry of ER visits, consults with specialists, and hospitalizations followed. The pain persisted, then worsened. Nothing provided more than minimal relief. Most of the time, her pain was 10 on a scale of a 10. When hospitalized, it sometimes dropped briefly in response to intravenous medication; more often; it did not—but learning things like biofeedback while in an environment with others who understood was helpful for coping with the unremitting pain.
Diagnosis was elusive, and doctors disagreed. Because she had dramatic—but short-lived—response to a particular drug and some elevation of the pressure in the fluid surrounding her brain and spinal cord, it was speculated that she had a condition known as pseudotumor cerebri. As its name suggests, this disorder mimics a brain tumor, which causes pain by increasing pressure in the skull. (And thank God for that lack of tumor!)
Treatment for pseudotumor cerebri was begun-—and continues today.
But there was more—and no one seemed to know what that might be. The pseudotumor treatment provided a bizarre sort of relief; while providing a sensation of pressure release, it seemed to almost make way for pain of a different nature to break through. We’ve since learned that many have similarly complex, multifactorial headaches requiring different modes of treatment—but it was scary to see her so ill when ostensibly, the problem had been diagnosed and was being treated.
As anyone who’s struggled with unresponsive, unremitting pain know, it’s often difficult to be taken seriously by the medical community. Even among specialists, there’s often an impatience with those who don’t get better. Worse, Abby’s doctors disagreed about diagnosis, leaving her to coddle conflicting egos, even as she struggled to learn what was wrong with her and—more importantly—what could be done to make it go away.
I knew from my own experience as a pain patient that passivity wouldn’t get her anywhere—the right diagnosis leads to the right treatment, and while getting there can be frustrating, sometimes the solution is pretty straightforward. I encouraged her to go to both Chicago’s Diamond Headache Clinic, where a diagnosis of complex migraine was made, and —because their treatment regimen didn’t bring remission —to the Mayo Clinic in Rochester, MN for a second opinion. At Mayo, the diagnosis of complex migraine was confirmed. Abby is now being treated for both pseudotumor cerebri and complex migraine.
Because dizziness/vertigo and falling were a concern, Mayo also provided physical therapy focusing on body mechanics and safety. Discharged back to Diamond’s care, Abby remained the sort of frustrating patient most doctors dread—nothing worked!
And then, about 7 months ago, Aimovig was introduced to her medical regimen.
This drug is a miracle. It took a couple of months and a dosage adjustment, but like magic, it erased all migraine pain. Abby has now gone more than 230 days without migraine! Aside from having a handful of days after her monthly injection, during which she feels as though she’s been given a massive dose of chemotherapy (she has!), she feels great. She is the poster child for Aimovig success. Now she can reclaim her life!
But the miracle comes with a hefty price tag. Between the time she fell ill in June, 2015 and August, 2018, many uncovered medical expenses accrued. These include:
* MOST importantly, for the short term, at least, the cost of Aimovig. This drug is responsible for Abby’s complete remission. Other meds treat specific problems, such as low potassium. But Aimovig is the real magic bullet. Initially, this campaign listed the cost as almost $700/month, pending a Medicaid appeal that *might* reduce it to a lower copayment, if not cover it fully. In fact, that was the amount Abby was short, last month. Each syringe—of which she now takes 2 each month–costs over $600; the cost of the drug to retail customers—discounted by GoodRx (use this—it’s great!) is $1208/month. The discount programs available to reduce the drug’s cost (very perversely) apply only to those who already have commercial insurance coverage; because she is on Medicaid, Abby does not qualify.
With Aimovig, Abby is a fully-functioning, healthy adult able to care for herself and—most importantly—return to work (and get the insurance to pay for the medication). Without it, she is 100% disabled. She’s bedridden, unable to tolerate light or sound. She becomes a prisoner of a dark room, eye mask, and noise-blocking headphones—and her pain remains at a level of 10 on a scale of 10. The difference is as dramatic as the difference between night and day. The importance of this drug cannot be overemphasized.
* Many ER copayments; until it became evident that the medical chestnut about seeking immediate care whenever you experience “your worst headache ever” brought no results, we heeded the advice, paying many out-of-pocket copayments.
* All visits to Diamond Headache Clinic. When BCBS coverage was extended by astronomically-expensive COBRA, this was in the amount of a standard copayment; now, the full $300+ visit fee is paid out-of-pocket, as the Clinic does not accept Medicaid or reduce fees for uninsured patients paying cash.
* All phone consults with Diamond (a more cost-effective way to get med refills or quick questions answered than an office visit).
* $5000, out-of-pocket—over & above other uninsured charges and/or copayments—paid to Diamond Headache Clinic for her inpatient care.
* Payment for nonformulary medications. Of the 15 prescriptions Abby currently takes, several that cannot yet be phased out are not covered by Medicaid.
* Transportation to and lodging at the Mayo Clinic.
*Copayment and uncovered medical expenses for diagnosis and treatment at the Mayo Clinic. (At the time, she was still covered by BCBS and has conventional bills.)
*Loss of income; when her contract with the Veterans Administration expired in late 2017, Abby was too ill to seek another job. She first received unemployment benefits, then was approved for full disability benefits about a year ago. Her income has been slashed, while her expenses have increased drastically due to the cost of medical care.
*Complete depletion of all savings–for all of us; this includes liquidating all assets of any value other than my (used) car, needed to get to work.
*Loss of my son’s income. Preston’s job ended just as I began my current job. He took over being home with Abby when I was not. (Dizziness and falls were a huge concern; she could not be alone for long). Becoming a caregiver required huge sacrifice from him.
* The cost of supporting three adults on one income. Typically, my two “roommates” contribute to the household, but Abby became too ill, and Preston became a caretaker. At a time when the nest is typically emptying, we found ourselves signing a lease for an apartment large enough for all of us. As Abby rebounds, this arrangement works well on every level other than financial, which all falls to me.
BUT, WAIT!! ABBY’S IN REMISSION!
Keeping Abby pain-free is absolutely the priority. While it would be great to recoup some of the losses incurred during the 3+ years she’s been ill, the really pressing concern is ensuring Abby continues to get Aimovig until it is covered by insurance. In that way, my brilliant, beautiful daughter can begin the process of getting her life back on track—as can her equally-deserving brother, who’s very sadly fallen through the cracks.
Abby’s using every resource available to her to find a job in her field, while remaining open to jobs in other arenas to tide her over. Preston is looking for a job, too. And I take every freelance writing, babysitting, dog sitting, housecleaning, and meal prep job I can cobble together. I even donate plasma twice a week for the little bit of cash it brings.
I’d give almost anything NOT to be on Go Fund Me asking for help. We’ve already had so much help from friends and family. Their generosity has meant the world to us, and we haven’t forgotten them (or the need to repay what they’ve lent us. Things just went from bad to worse—and then to WORST)—for a while).
Now that Abby’s in remission, she can move forward constructively. And me? It may have taken me decades to learn how to ask for help, but I’ve learned the very humbling lesson that sometimes, things are simply beyond our control—and those who can help often want to do so.
$5000 will allow us to continue to pay for Aimovig until we get a decision about its coverage. If the decision comes quickly, it may also also help defray the other listed costs—including doctor visits, doctor phone consultations, and many other medications.
It will, in short, keep Abby migraine-free until she has a job with insurance coverage for these things—sparing her a return to horrible, unremitting pain.
Soon, we’ll need to order the next dose of Aimovig. Can you please help Abby have another month without disabling pain?
Organizer
Betsy Banks
Organizer
Chicago, IL
