This one’s about medication shortages. I found myself facing down one of those for more than a week, and for the first medication in my life that I can’t do without. And this medication has been around since the 1990’s.
Dofetilide is an anti-arrhythmic medication to treat atrial fibrillation and atrial flutter. Over the last 3 months I’ve had 3 Emergency Department visits and a hospital stay when a first-line treatment didn’t work. This medication is holding me stable and is keeping me away from the Emergency room or worse. It’s supposed to succeed in about 70% of patients with my condition.
When the time came for a refill, I was told by my pharmacy it was on backorder. Three pharmacy phone calls later and after almost a week’s delay from the original promised date, they were willing to order it from another supplier. But then they filled the 30 day prescription instead of the 90 day one. Since this is in short supply, I had to have my MediCare Advantage plan call the pharmacy to have them unwind the first order and provide the remaining 60 day supply.
After a sigh of relief, I just got a text message. The medication is on backorder and delivery time has slipped 2 days since my phone call this afternoon. I called and spoke to a pharmacist who told me that even though I found several manufacturers who have it in stock, they must go through one of two intermediate suppliers to get it from a different manufacturer. Pharmacy benefit managers? They said they will follow up on Monday to get it ordered.
Many cardiac patients depend on this drug. Going off of it for an alternative is risky and would require another hospitalization. Surely my MediCare Advantage program would be on top of this to prevent that extra expense. Or would they? And how many other essential medications are handled in this hit or miss fashion? What happens to people who are less able to follow up than I can? And, who can fix this?
I’ve contacted my cardiologist, my Congresswoman and the White House. Is the active ingredient made overseas? Is there conflict between manufacturers with some holding the power of first supply?
This is America, isn’t it? We’re not a third world country, or are we?
Hi Gary, I'm glad you have the ability to follow through. and I'm glad you're ok.
Good that you told your Congresswoman and the White House. I will look into the ingredients and see what I can learn for you.
In the meantime I recommend sending the letter you sent to Congress to Xavier Becerra Secretary of HHS at xavier.becerra@hhs.gov, and to Chiquita Brooks-LASure the head of the Center for Medicare and Medicaid Services - Chiquita.Brooks-LaSure@cms.hhs.gov. I think a copy to Patty Murray is also a good idea. I'll let you know what I learn. Be well
Yes, I saw both of those and discussed the ASHP one with the pharmacist, who still must go through the two intermediaries. Also, an internet seach did not reveal teh actual missing ingredient other than the active ingredient itself. What is its raw form or raw components? Where is that original material sourced? Are there limited overseas sources?
BTW another pharmacist doesn’t like drugs.com for looking up drug interactions. For Tiklosyn, they list Rolaids, but the issue is really a change in electrolytes that would only occur if I were to simultaneously chew five packs of Rolaids or use a colonoscopy bowel cleansing routine with Rolaids active ingredients. I wrote to drugs.com and they defensively stood by their info while saying I was right to consult a pharmacist. Thanks so much to them.
I checked the FDA site for shortages and Tikosyn is no longer listed. Still looking for factory info.
BTW this is not the first time Tikosyn has been in short supply - it was a crisis in 2008.
I wrote about a similar situation earlier this year for chemo therapy meds. In that case, there was a factory issue (cleanliness?) that shutdown a factory for quite a while.
Jersey shore in Neptune, NJ and Community Medical Center in Toms River.
He was not incontinent and could feed himself, cut his own meat, order his food, and get in and out of bed. They refused him all of those things, including giving him a recliner. Community medicine wouldn’t feed him for four days. 99 1/2!! Now he is unable to do any of those things himself. Hospital staff need to treat patients as individuals, not as invalids. Assisted living facilities need to stop sending 99 year olds to hospitals for falls when the person is unhurt, throws up from a weak stomach after giving medicine and no food, or faulty oxygen meters. Hospitals need to stop heparin and bloodwork when a 99 year old sleeps 18 hours a day with no blood clots, bloodwork numbers remain the same after 3 analyses and there is no medicine changes designated. This is patient abuse and Medicare abuse causing taxpayers millions. Catheters create incontinence… deregulation and retraining is needed. Now a healthy 99 has lost 20 pounds, is weak and refuses to eat!
“Like” isn’t the right word to endorse your very moving post. That situation is beyond awful. Who owns that medical center? Private equity? Are they understaffed? Have you reported this to adult protective services or the licensing board for that facility?
I asked an ombudsman who was supposed to advocate for seniors. After exchanging phone calls with all this info, they never returned calls and had the audacity after we moved my dad to our home and hire a private pay live in, we received a follow up call for an update. They were no help at all and wasted my time!
Hi Jill, Ombudsman was going to be my reply. I'm glad you thought of it and so sorry that it was a disappointment.
Your dad will have better care at home. Better than he can get elsewhere, because of you. My wife and I went through this with our parents and when I mentioned your situation to her she asked me to tell you that even though you've hired help, watch them carefully and make sure they are diligent as well as caring.
Good luck, please let me know how your dad progresses. I am hopeful he will do better with at your house...Alan
This one’s about medication shortages. I found myself facing down one of those for more than a week, and for the first medication in my life that I can’t do without. And this medication has been around since the 1990’s.
Dofetilide is an anti-arrhythmic medication to treat atrial fibrillation and atrial flutter. Over the last 3 months I’ve had 3 Emergency Department visits and a hospital stay when a first-line treatment didn’t work. This medication is holding me stable and is keeping me away from the Emergency room or worse. It’s supposed to succeed in about 70% of patients with my condition.
When the time came for a refill, I was told by my pharmacy it was on backorder. Three pharmacy phone calls later and after almost a week’s delay from the original promised date, they were willing to order it from another supplier. But then they filled the 30 day prescription instead of the 90 day one. Since this is in short supply, I had to have my MediCare Advantage plan call the pharmacy to have them unwind the first order and provide the remaining 60 day supply.
After a sigh of relief, I just got a text message. The medication is on backorder and delivery time has slipped 2 days since my phone call this afternoon. I called and spoke to a pharmacist who told me that even though I found several manufacturers who have it in stock, they must go through one of two intermediate suppliers to get it from a different manufacturer. Pharmacy benefit managers? They said they will follow up on Monday to get it ordered.
Many cardiac patients depend on this drug. Going off of it for an alternative is risky and would require another hospitalization. Surely my MediCare Advantage program would be on top of this to prevent that extra expense. Or would they? And how many other essential medications are handled in this hit or miss fashion? What happens to people who are less able to follow up than I can? And, who can fix this?
I’ve contacted my cardiologist, my Congresswoman and the White House. Is the active ingredient made overseas? Is there conflict between manufacturers with some holding the power of first supply?
This is America, isn’t it? We’re not a third world country, or are we?
Hi Gary, I'm glad you have the ability to follow through. and I'm glad you're ok.
Good that you told your Congresswoman and the White House. I will look into the ingredients and see what I can learn for you.
In the meantime I recommend sending the letter you sent to Congress to Xavier Becerra Secretary of HHS at xavier.becerra@hhs.gov, and to Chiquita Brooks-LASure the head of the Center for Medicare and Medicaid Services - Chiquita.Brooks-LaSure@cms.hhs.gov. I think a copy to Patty Murray is also a good idea. I'll let you know what I learn. Be well
There are lots of generics available for it here is a link - https://www.drugs.com/availability/generic-tikosyn.html Pfizer has the original patent for Tikosyn.
Here is a link to which manufacturers have it and which don't I hope this helps.
https://www.ashp.org/drug-shortages/current-shortages/drug-shortage-detail.aspx?id=940&loginreturnUrl=SSOCheckOnly
Yes, I saw both of those and discussed the ASHP one with the pharmacist, who still must go through the two intermediaries. Also, an internet seach did not reveal teh actual missing ingredient other than the active ingredient itself. What is its raw form or raw components? Where is that original material sourced? Are there limited overseas sources?
BTW another pharmacist doesn’t like drugs.com for looking up drug interactions. For Tiklosyn, they list Rolaids, but the issue is really a change in electrolytes that would only occur if I were to simultaneously chew five packs of Rolaids or use a colonoscopy bowel cleansing routine with Rolaids active ingredients. I wrote to drugs.com and they defensively stood by their info while saying I was right to consult a pharmacist. Thanks so much to them.
Hi Gary - Still working on this -
You are right about the 3 day hospital stay needed to switch meds in both directions.
Here is an AMA article - https://www.ama-assn.org/about/leadership/reforms-needed-alleviate-persistent-drug-shortages, Apparently this is the worst year yet for overall drug shortages.
I checked the FDA site for shortages and Tikosyn is no longer listed. Still looking for factory info.
BTW this is not the first time Tikosyn has been in short supply - it was a crisis in 2008.
I wrote about a similar situation earlier this year for chemo therapy meds. In that case, there was a factory issue (cleanliness?) that shutdown a factory for quite a while.
More to come.
Jersey shore in Neptune, NJ and Community Medical Center in Toms River.
He was not incontinent and could feed himself, cut his own meat, order his food, and get in and out of bed. They refused him all of those things, including giving him a recliner. Community medicine wouldn’t feed him for four days. 99 1/2!! Now he is unable to do any of those things himself. Hospital staff need to treat patients as individuals, not as invalids. Assisted living facilities need to stop sending 99 year olds to hospitals for falls when the person is unhurt, throws up from a weak stomach after giving medicine and no food, or faulty oxygen meters. Hospitals need to stop heparin and bloodwork when a 99 year old sleeps 18 hours a day with no blood clots, bloodwork numbers remain the same after 3 analyses and there is no medicine changes designated. This is patient abuse and Medicare abuse causing taxpayers millions. Catheters create incontinence… deregulation and retraining is needed. Now a healthy 99 has lost 20 pounds, is weak and refuses to eat!
“Like” isn’t the right word to endorse your very moving post. That situation is beyond awful. Who owns that medical center? Private equity? Are they understaffed? Have you reported this to adult protective services or the licensing board for that facility?
I asked an ombudsman who was supposed to advocate for seniors. After exchanging phone calls with all this info, they never returned calls and had the audacity after we moved my dad to our home and hire a private pay live in, we received a follow up call for an update. They were no help at all and wasted my time!
Hi Jill, Ombudsman was going to be my reply. I'm glad you thought of it and so sorry that it was a disappointment.
Your dad will have better care at home. Better than he can get elsewhere, because of you. My wife and I went through this with our parents and when I mentioned your situation to her she asked me to tell you that even though you've hired help, watch them carefully and make sure they are diligent as well as caring.
Good luck, please let me know how your dad progresses. I am hopeful he will do better with at your house...Alan
One more idea, Jill - (sort of trust but verify) think about putting a video baby monitor in your dad's room....Let me know how he is doing...Alan
Done! Have a great weekend!