Glanzmanns GT / General Discussion / Archives / 09-02-2008 / Novo 7 Survey

Topie: Novo 7 Survey
February 17th, 2008 12:18 AM
Roger I have read all of the posts on Novo 7, but am wondering if you could all post answers to the following questions about Novo 7, in order that those of us concerned about covering the cost of Novo 7 can use this information as we advocate with insurance companies, health professionals, the government, Novo Nordisk, etc.

Our son Daniel (age 17) has never used Novo 7, but it would be nice to have it as an option to treat bleeding episodes without breaking the bank. (He has used Amicar since he was a baby, and has received platelets 4 times).

1. Have you ever used Novo 7 for GT?
2. Which country are you in?
3. How much do you pay for Novo 7 (% & currency amount)?
4. How much does insurance pay for Novo 7 (% & currency amount)?
5. How much does government pay for Novo 7 (% & currency amount)?
6. How much does another organization pay for Novo 7 (% & currency amount)?
7. Has your insurance company ever refused to cover Novo 7?
8. Do you need prior approval from your insurance company before using Novo 7?
9. Is Novo 7 on your insurance company's formulary (list of covered drugs)?
10. For what kind of bleeding episodes do you use Novo 7?
11. How many times/how often have you used Novo 7?
12. How much Novo 7 do you use when it is needed?
13. Have you found Novo 7 effective in treating GT?

Roger R.

P.S. I should post an updated story on Daniel soon. The one listed on the web site now is 5 years old.
February 17th, 2008 06:10 AM
foxy Roger, my answers will be a lot different to everyone elses and I don't know if they will help or not as there are only 6 known GT's here.
1. No I have never used it.
2. Australia
3. Free of charge here. Paid by our Federal Gov.
4. Nothing
5. Don't know as the bill doesn't come to me.
6. Nothing
7. Doen't need to. All blood products for bleeders here are free. We have a national bleedeers list and you go on it as soon as you are diagnosed and they see that products are available for you in your area.
8. No
9. Again it is not needed.
10. It is for haemophilia, Easter VWB and GT and any other type of bleed.
11. Never. I have only just been diagnosed and just put up with the bleeds till now.
12. Sorry no idea.
13. Have heard it is.
Hope you get something out of this but I will say that the same firm that makes Novo7 for an horendous price in the US gives it to us on our NHS. Sorry don't know what you call it where you are. It means on a cheap script here.
Sandy
February 17th, 2008 11:31 AM
Tami Hi Roger,
My son Quinn is 4 years old and was Dx at 2 months. His story is on the stroy page. You have probably read some of my posts regarding Novo7. I will give your questions a shot:

1. Have you ever used Novo 7 for GT? Yes.
2. Which country are you in? USA
3. How much do you pay for Novo 7 (% & currency amount)? Our insurance covers it. We pay a $40 copay for the doses that we keep at home. We do not pay seperately for Novo7 when given while admitted to hospital.
4. How much does insurance pay for Novo 7 (% & currency amount)? It is hard to say because I have seen several different amounts on our EOBs. Quinn received Novo7 for the course of a 2 night hospital stay last year and the total billed charges were $58,000 ($55,000 of that was just for the Novo7). Our insurance paid their negotiated rate of $48,000. We paid our deductible. For outpatient services I have seen where the insurance paid $1500 a dose.
5. How much does government pay for Novo 7 (% & currency amount)? In the US, I don't know if they cover it under Medicaid or Medicare--I doubt it since the FDA has not approved it for the GT Dx.
6. How much does another organization pay for Novo 7 (% & currency amount)? BCMH (Bureau for Children with Medical Hanicaps) might cover it, but I don't know how much they pay. They would negotiate rates locally with facilities and providers.
7. Has your insurance company ever refused to cover Novo 7? Not yet!
8. Do you need prior approval from your insurance company before using Novo 7? No, as long a using an in-network provider.
9. Is Novo 7 on your insurance company's formulary (list of covered drugs)? Yes.
10. For what kind of bleeding episodes do you use Novo 7? Anything that does not stop with Amicar, or for joint and softissue bleeding. Specifically Quinn has had Novo7 for a pinched finger after stitches would not stop bleeding, a Subgaleal hematoma, joint bleed in the knee 2x, nose and mouth bleeding after a chair fell on his face.
11. How many times/how often have you used Novo 7? Maybe 5 or 6 times in his 4 years.
12. How much Novo 7 do you use when it is needed? Depending on the bleed. One dose infused every two hours for active bleeding, then every 4 hours.
13. Have you found Novo 7 effective in treating GT? It is hard to say, but I think it has worked for Quinn. There have been times that he was infused, and later wondered if the bleed would have resolved on its own. It is a difficult decision to make when your child is bleeding.

Due to the risk of developing antibodies to platelets, I would always use Novo7 first.

Hope this helps!
Tami
February 17th, 2008 01:21 PM
Joy 1. Have you ever used Novo 7 for GT? Yes 2. Which country are you in? UK, Portugal, Spain 3. How much do you pay for Novo 7 (% & currency amount)? Nothing in UK. Private insurance covered Spain (9,000 GBP) and I don' t know what will happen if I need it in Portugal. 4. How much does insurance pay for Novo 7 (% & currency amount)? In Spain my UK insurance covered the whole cost. 5. How much does government pay for Novo 7 (% & currency amount)? UK 100 per cent, although I have been told that should I require major surgery it might be that would insist on using platelets as well to keep down the costs. Whether my insurance company would pay to prevent me having platelets I am not sure, when I would have to have any operation in a National Health Service Hospital I am not sure. Not sure of the UK cost. 6. How much does another organization pay for Novo 7 (% & currency amount)? Insurance 100 per cent in Spain. 7. Has your insurance company ever refused to cover Novo 7? No 8. Do you need prior approval from your insurance company before using Novo 7? No 9. Is Novo 7 on your insurance company's formulary (list of covered drugs)? Presumably 10. For what kind of bleeding episodes do you use Novo 7? Tooth extraction and pre-colonoscopy 11. How many times/how often have you used Novo 7? Twice 12. How much Novo 7 do you use when it is needed? Three doses x 90mg per kilo of body weight for tooth extraction and one for the colonoscopy 13. Have you found Novo 7 effective in treating GT? Definitely. Had no bleeding with either procedure.
(Edited by Joy)
February 17th, 2008 03:30 PM
Kaytee 1. Have you ever used Novo 7 for GT? Yes
2. Which country are you in? USA
3. How much do you pay for Novo 7 (% & currency amount)? Nothing
4. How much does insurance pay for Novo 7 (% & currency amount)? I think 80% about $35,000 for one 3 dose
5. How much does government pay for Novo 7 (% & currency amount)? What ever my insurance does not cover
6. How much does another organization pay for Novo 7 (% & currency amount)? Hemaphilia Treatment pays thur a goverment grant
7. Has your insurance company ever refused to cover Novo 7? no
8. Do you need prior approval from your insurance company before using Novo 7? No, but I do notify my case worker (nurse) so she knows that I will be ordering more
9. Is Novo 7 on your insurance company's formulary (list of covered drugs)? No
10. For what kind of bleeding episodes do you use Novo 7? Soft tissue bleed from ankle joint, Subdural hemotoma, teeth extraction
11. How many times/how often have you used Novo 7? 3 times and only when I am having or going to have a bleed such as the teeth extraction
12. How much Novo 7 do you use when it is needed? 10.8 x 3 every 2 hours and repeat if needed with same doses. I keep one full 10.8 dose and if I know in advance I will use it I will order another before I use it so I will have a second dose handy if needed
13. Have you found Novo 7 effective in treating GT? Yes, all the three times. With the subdural hematoma, the neurosurgeon told me if it was not for the Novo 7 (I used every 2 hours the first 24 hours, then every 3 @ 24hours, 4 hours @ 24, 6 hours @ 3 days, once a day for 9 days when the CT Scan said no hematoma could be found) he would have had to do surgery. He said he was a good surgeon, but was not sure if I would have survived the surgery.
February 18th, 2008 07:48 AM
Elise Roger, You asked some great questions. My insurance (BCBS) will not allow me to have novo 7 in my home Novo7 is paid for if the kids recieve it in the hospital or clinic from their stock. If traveling in the states, I locate the hemaphilia centers which stock novo7. The dosage varies widely---The package insert recommends 90 meq per kg of body weight (I would double check that--as I don't have any here). Our hematologist gives the kids 300 meq per kg of body weight--usually a one time dose in conjunction with platelets for a nosebleed. Bleed elswhere (joints or bowel) just platelets are given. The kids have recieved novo7 too many times to count--I would guess somewhere around 40 times. Novo 7 is used "off label" for GT. I guess that is why the dosage and treatment and insurance rules are so varied.
February 18th, 2008 05:14 PM
Lisa W Roger, We have used Novo 7 many times in the past for both of our girls. We never had to pay anything for it it was always covered by insurance. Thank the Lord on that. One time we gave a total of $145,000.00 US currency in novo 7. In my family we do not believe that it was effective in stopping either of the girls when they were bleeding. But as we all know every GT patient is different. We were never asked to keep any at home but then we were the only GT patients in Oregon at the time, and using Novo 7 was new to everyone. I hope this helps.