I was fortunate enough to be part of an investigational study of a new IVIG drug... and now that drug is coming to market! The results of the study of the drug can be found in the Journal of Allergy and Clinical Immunology.
I really liked the product and may seriously consider switching to it from Gammagard, depending on what Baxter does about ensuring their supply chain. I never want to be without product and I really don't want to have to change products back and forth because companies can't get their acts together. So far, I haven't felt much impact from any Gammagard shortages, but I really don't want to. Perhaps, this new product will be easy to get. I already know I tolerate it well.
It's an exciting day! :-) More competition among producers is a great thing!
Friday, July 27, 2012
Tuesday, July 24, 2012
Who You Gonna Call?
Having a rare, chronic illness can be distressing at times. People often feel frightened and alone. At first, after diagnosis, the doctor you trust most often can't help you or explain what is going on very well... partially because they don't necessarily understand it all that well. As patients, this is a difficult thing to face, especially when Google is one of the most misleading ways to find information if you don't exactly know what you're looking for.
This is where illness friends come in. I look at the illness communities on Facebook and just think about all the questions people ask. Questions of why or how. Questions of who or when. Questions of what. Distressing symptoms are altogether too common when you have an immune deficiency, so you feel a little silly running to your doctor with them all the time...
That begs the question, then, of who you CAN turn to... Your sick friends. Inevitably, someone somewhere has had or heard of what you have. It is group think at its best. "Hey, sick people. I have a problem. Anyone have any ideas? What should I ask my doctor?" Some people even think they are asking silly or stupid questions, but I've learned that none of the information gained can be taken for granted. I don't know how many times I've explained infusion reactions to doctors... information I learned through trial and error and the experience of others. It would be difficult to properly explain what it means to actually understand what is going on better than the medical professional who is supposed to be helping you. It's a weird world, living on the medical margins. Your best bet is really to be plugged in to a community to help you.
I definitely still need my doctors and nurses, but my sick friends make appointments so much easier and have really improved my quality of life through their generosity of spirit and their generosity of knowledge. Thank goodness for them.
This is where illness friends come in. I look at the illness communities on Facebook and just think about all the questions people ask. Questions of why or how. Questions of who or when. Questions of what. Distressing symptoms are altogether too common when you have an immune deficiency, so you feel a little silly running to your doctor with them all the time...
That begs the question, then, of who you CAN turn to... Your sick friends. Inevitably, someone somewhere has had or heard of what you have. It is group think at its best. "Hey, sick people. I have a problem. Anyone have any ideas? What should I ask my doctor?" Some people even think they are asking silly or stupid questions, but I've learned that none of the information gained can be taken for granted. I don't know how many times I've explained infusion reactions to doctors... information I learned through trial and error and the experience of others. It would be difficult to properly explain what it means to actually understand what is going on better than the medical professional who is supposed to be helping you. It's a weird world, living on the medical margins. Your best bet is really to be plugged in to a community to help you.
I definitely still need my doctors and nurses, but my sick friends make appointments so much easier and have really improved my quality of life through their generosity of spirit and their generosity of knowledge. Thank goodness for them.
Friday, July 20, 2012
To My Readers
Generally, I use this blog as an outlet for my own personal thoughts and feelings about things I run across on the internet. I refrain from using personal information about others whenever possible to get my point across.
Please understand that if you find something objectionable here, it is my own opinion, my own information, and my own responsibility. If you have an issue with what is posted here, please let me know, either via a comment or another means of communication.
Thank you.
Please understand that if you find something objectionable here, it is my own opinion, my own information, and my own responsibility. If you have an issue with what is posted here, please let me know, either via a comment or another means of communication.
Thank you.
Wednesday, July 18, 2012
Oh Crap. Alzheimers.
Let's start off by saying I do not begrudge other disease groups access to treatment. I don't wish for people to suffer.
Now that's out of the way, I am really frightened by the prospect of Alzheimer's patients receiving IVIG as a treatment. The therapeutic dosage I've seen online is something like twice as much as the PIDD dose every two weeks, instead of monthly. There are already rumors of shortages and talk that we may see the worst plasma situation since 2005. 2005 was scary. People couldn't get treatment. Doctors could not locate product. Not a good thing. This shortage scare is happening now with (I would approximate) 1 million people using the product, all of them rare diseases. This shortage is happening in an economic slump when there have historically been more plasma donations because people are strapped for cash.
Why else does this concern me? Alzheimer's is a "fashionable" disease. It has name recognition, celebrity boosters, etc. Any development with Alzheimer's is huge news around the world. There are also 5.4 million people with Alzheimer's in the United States. Using two-four times as much product. It is worrisome that the Alzheimer's lobby might get legal protections for their use of IVIG, which would trump mine. We have very few advocates, Alzheimer's has many very powerful ones.
My best hope is that they would develop a monoclonal antibody for Alzheimer's that would target the beta ameloid protein, but that is years of very challenging science down the road.
IVIG is the only treatment for CVID. There is nothing else even in the pipeline to treat me.
Now that's out of the way, I am really frightened by the prospect of Alzheimer's patients receiving IVIG as a treatment. The therapeutic dosage I've seen online is something like twice as much as the PIDD dose every two weeks, instead of monthly. There are already rumors of shortages and talk that we may see the worst plasma situation since 2005. 2005 was scary. People couldn't get treatment. Doctors could not locate product. Not a good thing. This shortage scare is happening now with (I would approximate) 1 million people using the product, all of them rare diseases. This shortage is happening in an economic slump when there have historically been more plasma donations because people are strapped for cash.
Why else does this concern me? Alzheimer's is a "fashionable" disease. It has name recognition, celebrity boosters, etc. Any development with Alzheimer's is huge news around the world. There are also 5.4 million people with Alzheimer's in the United States. Using two-four times as much product. It is worrisome that the Alzheimer's lobby might get legal protections for their use of IVIG, which would trump mine. We have very few advocates, Alzheimer's has many very powerful ones.
My best hope is that they would develop a monoclonal antibody for Alzheimer's that would target the beta ameloid protein, but that is years of very challenging science down the road.
IVIG is the only treatment for CVID. There is nothing else even in the pipeline to treat me.
Tuesday, July 17, 2012
Alea Iacta Est
I signed up with the One Medical Group. So far, it seems like it is extremely straightforward and their online system is great. I have booked an appointment with my preferred PCP for next week. We shall see how it goes, but right now, I'm excited.
One of my most hated of all activities is appointment scheduling for my doctors. This online option is the bomb diggity, at least as far as I am concerned. I can just go in, pull up the appointment calendar, select my chosen doctor and time I want and BAM! Done. All set. No calling and haggling over what is available or trying to figure out if they have an appointment around a certain time. No more trying to explain to the medically illiterate receptionist about what the problem is and why it is urgent. I can just write all of that in the notes field. My appointments are guaranteed to start on time and I'm only asked to arrive 5 minutes early, instead of the usual 30 minutes for first appointments.
I gladly welcome the medical profession into the 20th Century. I certainly hope this is the beginning of a long, beneficial relationship with this practice.
PS - I understand how privileged I am to have access to such a service. I am incredibly grateful.
One of my most hated of all activities is appointment scheduling for my doctors. This online option is the bomb diggity, at least as far as I am concerned. I can just go in, pull up the appointment calendar, select my chosen doctor and time I want and BAM! Done. All set. No calling and haggling over what is available or trying to figure out if they have an appointment around a certain time. No more trying to explain to the medically illiterate receptionist about what the problem is and why it is urgent. I can just write all of that in the notes field. My appointments are guaranteed to start on time and I'm only asked to arrive 5 minutes early, instead of the usual 30 minutes for first appointments.
I gladly welcome the medical profession into the 20th Century. I certainly hope this is the beginning of a long, beneficial relationship with this practice.
PS - I understand how privileged I am to have access to such a service. I am incredibly grateful.
Friday, July 13, 2012
BRB Getting Cured Now...
There are few things that make me angrier than when people come into facebook groups about my illness and start talking about how they can cure this and fix that through some combination of diet, exercise and/or supplement pills....
The latest is a woman extolling the virtues of a Raw Vegan diet. Ok. I understand vegan diets have their place in this world, but DO NOT tell me that the "medical establishment" wants me to be sick. My doctor would like nothing more than to never have to see me again. I think he'd be the first to tell me about the MIRACLE CURE.... especially if it was so easy. If I had to eat nothing but raw radishes for the rest of my life, I would. I don't like radishes by themselves, either. It isn't for lack of effort that I am sick. Boy, do I wish it was. Oh man, would that ever be nice.
I think the reason it annoys me so much is because it's like these people think I WANT to be sick and I WANT to get IV treatments every month. Let me just tell you how much fun it is to sit in a chair, get poked several times, have refrigerated plasma protein pumped into your veins, and cost the insurance company $10-12k per month. SUPER FUN HAPPY TIMES! Everyone should do it. Uh. No. I wouldn't wish this on my worst enemy. I wouldn't allow someone to do it for me, even if they offered. It is kind of awful. I glaze over it a lot, but it's really terrible and I wouldn't want to put that on someone else. If there was any viable choice for me not having to do this for the rest of my life, I would take it. I would even be willing to participate in dangerous medical trials (depending on the hospital, of course, I'm not completely crazy) if it meant a cure for me or for people I've grown to love through this disease.
I wouldn't trade or change my experience for anything, as I think it has made me a stronger person, but I really would love it if no one had to become stronger in this way. It's not fair, it's not fun, and it's most certainly not a choice.
The latest is a woman extolling the virtues of a Raw Vegan diet. Ok. I understand vegan diets have their place in this world, but DO NOT tell me that the "medical establishment" wants me to be sick. My doctor would like nothing more than to never have to see me again. I think he'd be the first to tell me about the MIRACLE CURE.... especially if it was so easy. If I had to eat nothing but raw radishes for the rest of my life, I would. I don't like radishes by themselves, either. It isn't for lack of effort that I am sick. Boy, do I wish it was. Oh man, would that ever be nice.
I think the reason it annoys me so much is because it's like these people think I WANT to be sick and I WANT to get IV treatments every month. Let me just tell you how much fun it is to sit in a chair, get poked several times, have refrigerated plasma protein pumped into your veins, and cost the insurance company $10-12k per month. SUPER FUN HAPPY TIMES! Everyone should do it. Uh. No. I wouldn't wish this on my worst enemy. I wouldn't allow someone to do it for me, even if they offered. It is kind of awful. I glaze over it a lot, but it's really terrible and I wouldn't want to put that on someone else. If there was any viable choice for me not having to do this for the rest of my life, I would take it. I would even be willing to participate in dangerous medical trials (depending on the hospital, of course, I'm not completely crazy) if it meant a cure for me or for people I've grown to love through this disease.
I wouldn't trade or change my experience for anything, as I think it has made me a stronger person, but I really would love it if no one had to become stronger in this way. It's not fair, it's not fun, and it's most certainly not a choice.
Thursday, July 12, 2012
Rights of Disabled Person > Your Allergy Issue
Imagine this scenario. You are allergic to dogs. You are in need of a service animal. You get a service pig. The pig is just as well-behaved, well-mannered, and well-trained as any seeing eye dog....
You need this animal because you have seizures, you can't turn on lights, you're blind, you have any number of issues and can't function on a day to day basis without help, and your service animal has provided you with a level of independence and freedom you've not had since before your injury, blindness, ever in your life.
This is not a stretch of the imagination. Service animals provide a level of independence and freedom to the people they serve. I applaud the USDOT for making rule changes that allow these valuable animals on board planes. I can't imagine needing such an animal, but I also can't imagine denying these people the right (and it is a legal right under ADA) to bring their animals with them.
As with anything, there will always be naysayers. Why is it that people think their allergies or whatever entitle them to deny other people their legal rights? You can take a benadryl or a claritin or whatever... These animals aren't pets. Not even close. Some people who need service animals wouldn't be able to travel without them. It makes me sad that people would even consider this an issue. Please be compassionate to others and realize that these aren't pets. These are animals who serve.
You need this animal because you have seizures, you can't turn on lights, you're blind, you have any number of issues and can't function on a day to day basis without help, and your service animal has provided you with a level of independence and freedom you've not had since before your injury, blindness, ever in your life.
This is not a stretch of the imagination. Service animals provide a level of independence and freedom to the people they serve. I applaud the USDOT for making rule changes that allow these valuable animals on board planes. I can't imagine needing such an animal, but I also can't imagine denying these people the right (and it is a legal right under ADA) to bring their animals with them.
As with anything, there will always be naysayers. Why is it that people think their allergies or whatever entitle them to deny other people their legal rights? You can take a benadryl or a claritin or whatever... These animals aren't pets. Not even close. Some people who need service animals wouldn't be able to travel without them. It makes me sad that people would even consider this an issue. Please be compassionate to others and realize that these aren't pets. These are animals who serve.
Wednesday, July 11, 2012
To Concierge or not to Concierge
I have been thinking for a little bit now about getting a new primary care physician. I LOVE my current PCP, but her office isn't terribly convenient to my work and it can be very difficult to get the appointment time I need. She's completely focused on me when I'm there, though, and she knows me and deals with things... but I sometimes feel something lacking. I really enjoy talking with her, but she's not necessarily proactive in helping me with things and I am not entirely sure she's still a good fit for me.
In comes an offer for an affordable concierge physician service. They have a snappy website. They offer online scheduling for same-day appointments. They have specialists in women's health and complex conditions... and an office that is a 5 minute walk from work. It seems like a good idea, but what if they aren't as good as the current PCP? What if I want to go back? Will she feel betrayed?
I understand this is certainly a first world problem that I am fortunate to have.... and that many people even in the US don't get this kind of choice. But with choice is coming confusion.... What to do?
In comes an offer for an affordable concierge physician service. They have a snappy website. They offer online scheduling for same-day appointments. They have specialists in women's health and complex conditions... and an office that is a 5 minute walk from work. It seems like a good idea, but what if they aren't as good as the current PCP? What if I want to go back? Will she feel betrayed?
I understand this is certainly a first world problem that I am fortunate to have.... and that many people even in the US don't get this kind of choice. But with choice is coming confusion.... What to do?
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