IV and SC doses

[hlh]

Hello everybody!

My father has specific antibody deficiency and lymphopenia, but hasn't started Ig treatment yet.

My father needs to change health insurance companies this year and I am trying to find one that has the best coverage for both IVIg and the SC version. So I have to call up each company with his list of medicines, and the company tells me how much each one will cost us. But I have to tell them the dose per month so they can calculate the cost.

I asked my Dad's doctor today if he could tell me one of the brands/doses that he typically uses. As he was rushing to leave, he told me 0.4g/kg and that Gammaguard makes both SC and IV versions.

So Sam mentioned that the 0.4g/kg is typically given IV every 3 weeks or so, initially. What is the typical dose for SC and how often is that given? I realize that everyone's schedule is a little different, but I just wanted a typical initial schedule to figure out a potential cost.

Hope that makes sense. Thank you.

[john]

hi,
i gather you are in the US.
your dad's treatment regime will depend on his own exact diagnosis and needs, and he needs to get the doses and prices from his consultant.
the figure for IVIG that you have is broadly what we get as CVID patients (here in the UK), but i know that patients with differing diagnoses have different doses for their own needs.
hope you get a reply from someone a bit more knowledgeable than me.
by the way i think it's great that you are supporting your dad by getting involved with this!!
take care and best wishes to you and your dad - john

[hlh]

Hi John,

Thanks for your input. Hopefully more will post.

I hope someone will still pipe in and let me know what their starting dose of SC Ig is, so I can look up the medicine in the lists of the insurance companies to see what it will cost. It will be more expensive then all of my father's other medicines combined. But I can't hide my head in the sand like my father does - I have to find an insurance plan.

Yes, I am from the US. As you may know, costs of health care are very different here from in the UK. I have to be very careful for my father and make sure I don't switch him to the wrong health plan or we will be in trouble once he starts treatment.

Our doctor is not very helpful about costs. This is actually a problem sometimes in the US. Doctors sometimes order tests without thinking about what the cost is for patients. Of course, it is because they are doing what they think is best for us in most cases, and there is no way they can know what the cost is for every patient. Many health plans are different, so each patient actually pays something different. I know it sounds crazy, but it is true.

All our doctor said to us when I asked for the likely starting dose was "Oh it will be very expensive.... $8,000 a month". Of course, we cannot afford that. My father is disabled and retired. So why did the doctor say that to us, and nothing more? Because he is "assuming" that we have an insurance company will pay for it. But the insurance company will not just pay for it, because my father is over 65 and the type of coverage we have at this stage is very poor for medications. Since my father does not have a diagnosis of CVID, but has specific antibody deficiency/lymphopenia, the coverage is actually worse for us. For those of you in the US, this means that medicare part B will not cover his treatment. It means I need to find a Medicare part D plan that will, and costs vary with different plans. Unfortunately, he is losing his current drug plan in 10 months, which would have covered it very well.

Last year, we had to pay out of pocket over $15,000 towards my father's health care. He has a lot of medical problems every since he was hit by a car. And that is without IVIg or SCIg. And that is with my careful management of every single claim/bill/doctor visit, fighting with the insurance companies every step of the way. So you can imagine how nervous I am about what's going to happen next year when we lose the insurance we have now, since that number will go up. Well, maybe you can't imagine since some of you are in England and your system is do different.

Of course I realize that the initial dose my father would start with would likely change, and that everyone is different. Don't worry - I am not planning to buy SC Ig on the black market and start infusing my dad myself!

I am just hoping that someone will be kind enough to tell us what dose/frequency of dose of SC Ig they started with. If you have similar diagnoses to us, that's wonderful, but I don't expect we will find that. But it at least gives me a vague idea, and a starting point.

Thank you so much. Sorry for the long post. As you know, it is awful not having anyone to ask, and to have a doctor that rushes you in and out of appointments and is not knowledgeable about costs of care.

[s162216]

Hi,

I'm assuming based on the fact that your fathers consultant told you that the IG solution could be IV or SC, that he's likely going to have Gammagard Liquid as thats the only one to my knowledge which is approved in the USA for both. Looking at the prescribing information for it, the dose of SC per week is the dosage for IV multiplied by 1.37 and then divided by 3.

So for instance if your father weighed 75g then at 0.4g/kg that comes to an IV dose every 3 weeks (standard time between infusions) of 30g. 30g x 1.37 = 41.1g/3 = 13.7g per week.

Hope you find this helpful and are able to get the right insurance etc to get this for your father. I still find it worrying that despite having one of the biggest economies in the world, the USA does not have national 'free at point of use' healthcare system like almost every other Western nation.

Sam

[marksmom]

hlh,
Check out this link: www.hizentra.com/professional/about-hizentra/hizentra-dosage-calculator.aspx

It's the Hizentra dosage calculator of figuring out how the dosage is for subq. You can 'estimate' the dosage of IVIG he would need by slf's calculation .4g/kg, but that is an estimate -- some people need higher doses. Figure out how many kilos your dad's weight is and calculate .4g per each kilo in weight. When you have that figured out, plug it into the hizentra link and it will tell you the dose of subq he would receive based on the amount of IVIG he would receive.

you can google 'calculate lbs to kilos' to help make the conversion.

I'm alarmed at your immuno. I remember you posting previously about the situation. Have you contacted IDF to see if there is someone else in your area? This is a serious situation, and not one that is "rushed" and trying to determine how you are going to come up with the best plan is a critical decision.

Also, have you contacted your local assistance office to see if there is any help there with his medical costs?

Keep receipts for all your out-of-pockets for tax year deductions, as well.

Best of luck,
Rachel mom to Mark 10 CVID

[hlh]

Thank you Sam. This is perfect.

Yes, I agree that our system is a problem. I am still very grateful to Obama for trying to improve it, although he was unable to get a "Single Payer" option approved for those who do not have insurance through their employer. A big loss.

I don't think our country will ever have Universal Health Care, as in England or Canada. Believe it or not, it is not part of the fundamental culture/belief by enough people in our country that it is needed - or that people deserve it.

Many people here believe in the "American Dream" - and I do too, to some degree. If you work hard here, it is amazing what opportunities you can have. My ancestors were all poor, uneducated European immigrants who came here > 100 years ago. But with focus on education, hard work, frugality, and family - my generation are all independent professionals with college/graduate degree educations. Class and race are still a problem here, but they still hold you back much less then in England, where I lived for a time.

But our "country's" tragic flaw..... is that we attribute both success and failure to the individual, when sometimes luck and circumstance need to be considered.

We all can have good or bad luck at anytime. My father for example, was on the road with a stable career and looking forward to a nice retirement by age 70. But he was hit by a car, hospitalized for 6 months with many horrible injuries, and now requires full time care. He lost his job, his health, his savings, and we quickly learned how important good health insurance can be. Most people in the US are driven into poverty when things happen to them like happened to us. Some get dropped by their insurance carrier, some run out of coverage...

I have found that only people who have suffered a severe or catastrophic health event or diagnosis truly understand what the struggle for improved and universal health care means. The people who reject it in the US are often young (healthy and naive), extremely wealthy (so they can afford their own care, and/or may not want to "subsidize" care for those who cannot afford it), or simply.... lucky. Lucky that nothing has happened to them or their loved ones. Yet. So they cannot relate to the stories that many of us can tell.

Sorry for the rant!

[s162216]

Hi,

Its true what you say about young people - I googled for 'American opinions of the NHS' and some stuff that came up and was blatantly untrue was amazing! Probably the biggest backfire for the Rupublicans in your last election were the infamous 'NHS Death Panels' remarks and how Steven Hawking wouldn't have been allowed to live with the NHS, only for him to respond saying that he wouldn't be here without the NHS and it had supported him all his life!

Coincidentally most young Americans who actually experienced the NHS realised that after being on their parents insurance for years that they expected 'silver service' and how naive they were being as they had never had to experience getting insurance or paying for it and the NHS provided it (in effect) for free. The NHS may have its flaws, but to be honest everything does and its certainly cared for me and my associated conditions just fine for all of my 20 years.

Sam

[hlh]

Jan 14, 2012 19:10:12 GMT marksmom said:

hlh,
Check out this link: www.hizentra.com/professional/about-hizentra/hizentra-dosage-calculator.aspx

It's the Hizentra dosage calculator of figuring out how the dosage is for subq. You can 'estimate' the dosage of IVIG he would need by slf's calculation .4g/kg, but that is an estimate -- some people need higher doses. Figure out how many kilos your dad's weight is and calculate .4g per each kilo in weight. When you have that figured out, plug it into the hizentra link and it will tell you the dose of subq he would receive based on the amount of IVIG he would receive.

you can google 'calculate lbs to kilos' to help make the conversion.

I'm alarmed at your immuno. I remember you posting previously about the situation. Have you contacted IDF to see if there is someone else in your area? This is a serious situation, and not one that is "rushed" and trying to determine how you are going to come up with the best plan is a critical decision.

Also, have you contacted your local assistance office to see if there is any help there with his medical costs?

Keep receipts for all your out-of-pockets for tax year deductions, as well.

Best of luck,
Rachel mom to Mark 10 CVID

Thank you Rachel! I really appreciate the links, and the moral support.

Our search for an Immunologist has taken years. His previous doctor retired 3 years ago - and we have been struggling to find a good doctor since. And his subsequent doctors were all worse then the current one. This is such a specialized area... Would you believe my father's current doctor is quite "famous" and used to be the head of the most important Immunologic Academic Society in the US? But he is still rushed, sloppy and paternalistic. I am actually also getting tired of having an untrained "resident" doctor (different one every time) spending most of the visit with us, with the senior doctor swooping in for the last 5 minutes.

My father is also so sick of doctors that I have to be very careful, or sometimes he even refuses to see them. When I criticize the docs, it upsets my dad.

If you can believe it, Immunodeficiency is actually not the most complicated or specialized of my father's medical problems. He has several very challenging ones, and at times, I feel that I know his management better then his doctors. As a result it does not surprise me anymore that I need to direct doctors for many aspects of his care. It is hugely time consuming, and very stressful, knowing how sloppy doctors are in general.

At my father's Immunology visit, I reminded the doctor to check his cell counts since they hadn't been done for 6 months (he must start Bactrim prophylaxis if his CD4 counts fall any lower), I suggested rechecking Pneumococcus antibodies before next fall to see if he should get another Prevnar shots, and I asked about the Hepatitis B immunization series since he never got it. The docs response to all suggestions? "Good idea...." All the doctor cared about was --- no infections since last visit. While that is the most important part, I have learned prevention is just as important. The prevention/small details get lost in the visits. So I have to remember them.

Yes good thought - I keep every receipt for tax deductions. I recently just finished the 2011 spread sheet, which is how I knew how much it costs (gulp!). We are looking into every assistance option I could find, and my fingers are also crossed that we may get direct financial assistance for the SCIg from the company that makes it, as I have heard this sometimes happens.

Best of luck to you and Mark as well. Thank you!