Monday 10 October 2011

Info for New Burzynski Patients

This post is for those caregivers or patients who are considering undergoing the Burzynski Clinic's antineoplaston treatment.  I am posting this as there were a few surprises for us after we started Supatra's treatment that ended up costing us more then we had anticipated.  Some of these additional costs are valid ones that the clinic and others have charged us but there were also some that they should not have.  Additionally, we do not dispute the need to pay the legitimate additional costs but have issues with the fact that some were not explained at all and others not well enough explained and therefore it impacted our financial planning and forecasting that we did in preparation for this trip.

The medical costs (excluding travel and living costs) we have incurred to date are listed below and then followed by explanations where one is warranted further on:

1.  $1,500 - Burzynksi's initial application and consultation fee.  No surprises here as this was clearly explained to us in advance.

2.  $21,846 - Initial deposit to begin treatment, that includes $7,000 for the infusion pump.

3.  $3,805 - cost of Hickman Line (catheter) insertion. This is charged by the hospital conducting the surgery and is not done at the Burzynski clinic.

4.  $4,749 - Cost of baseline MRI scan needed to start the antineoplaston treatment.  This scan is not done at the Burzynski clinic and is outsourced.  Our follow-up scan after doing some searching around in Houston cost us $750.00!

5.  $5,000 - Extra cost of initial training and treatment at the Burzynski clinic.

6.  $7,600 - First months case management fee that must be paid before leaving the Burzynski clinic for home.  Once you have been checked out of the clinic after your training this will be a monthly fee incurred by the patient on a monthly basis.

If you undergo this treatment you should then plan to spend at least $45-50,000 dollars in the 3-4 weeks.  You should, however, continue to read below as some fees can be higher whereas we just managed to get them cheaper during our stay.  Additionally, this amount does not include travel expenses and then living costs in Houston while you are here for the initial training to include; transportation, hotel/apartment, car rental, food, special supplies needed for patient, etc.

Further details on our experience and costs outlined above:

#2.  During our communication before coming to the clinic we were told that they would need an initial deposit of $18,000 that would include Burzynski related training and treatment costs and the cost of the $7000 pump.  When I questioned the word "deposit" and asked how much I can expect to pay for the first month I was told that on average most people incur an additional $4-5,000 in expenses and so I should count on about $22,000 cost for the first month.  On arrival and paying the first deposit I asked for a breakdown in the $21,846 requested of me and was told that approx. $1600 was for supplies, $2440.00 was for lab work, $7000 for the pump and $10,000 for other stuff.  When I questioned the other stuff and asked for more detail the financial lady could not give me anything else, fumbled around her office for some paper that would explain the cost and then just said it was for 'you know' other costs such as the doctors, training, etc.  Because the amount I was giving was close to the $22,000 told to me earlier I thought that I would not owe anymore until we needed to start paying the monthly case management fee.  When I was given the receipt it said it was an estimate and so questioned that and was told that there may be some unforecasted additional costs that might need to be paid at the end of our training at the clinic.  Then during the training we were given a set amount of medical supplies and told that whenever we started running low we just need to ask for more and there would be no problems (indicating that its all included in this $10,000 and that we were covered).  During the training whenever I asked for more supplies the nurse would say 'ya,no problem, its all paid for by you' (again,thinking this was covered under the $10,000 part of the deposit) and hand me a handful of stuff.

The problem arose when we were close to finishing our third week (on a Tuesday) and we asked to see the financial lady to ask her something not related to the above.  When we arrived in her office she typed in our details in her computer and said 'right now you have a balance owing of $4,000'!  We were totally shocked and asked what for and she stated that these are costs that we have incurred since starting the training.  She then produced a detailed list of expenditures, i.e. all the supplies we were given to include a $1.50 metal clip that I do not even recall receiving or needing, lab work, doctors calls (they come to see the patient every morning), training, any after hour calls we made to the clinic, and a daily $395.00 charge for the overall treatment program.  I was flabbergasted to say the least as I pointed out to the lady that I had asked for a detailed explanation of the $10,000 on the first day and she could not explain anything, yet here she is giving me a detailed list of costs that are deducted from the deposit.  Of course we started arguing with her demanding to know why we were not told that we would be incurring such significant cost over runs and why the clinic could not come up with more accurate estimates of the first three weeks costs after having treated thousands of patients.  Needless to say we asked to be discharged immediately so as not to incur any other additional charges and considering we were at the end of our three week training session.  We then raised this and other issues with Dr. Burzynski when we had our discharge meeting the next day.

What new patients have to know is that everything you do and get at the clinic you will be charged for.  Each day when you see the nurses for training they have a supply list and as they use something or give you something to use it gets added to this list which is then submitted to accounting.  Additionally, demand a detailed print out of costs that you will be charged so that you have this ahead of time.  Second, if the patient is a child, question the need to stay for three weeks as is stipulated in their literature as there were other parents checking out after only 10 days and we were already wondering why (it seems that the other financial accountant is much more forthcoming with costing information then the lady we had).  You should also check the itemized list of costs as we and others fund errors in the bills - not big differences in the end but differences none the less.  As an example, for the last week or so we were drawing the blood from Supatra on our own but at the clinic and they charge a $20 fee for this; so we had this removed.  Some more examples of costs charged by the clinic to you is:

$100 each time the doctor sees the patient
$95 each time you call the clinic out of office hours with a problem
$60 each day for training
$20 drawing blood
$395 per day for the treatment program
all lab work and then any supplies you use to include the IV bags the antineoplaston comes in.

We took our time with the training and could have checked out a lot earlier, however, we were under the impression that this was all covered under our initial deposit.  Had the financial lady been more professional, explained everything at our first meeting and approached us a few days ahead of exhausting our deposit to let us know, we could have checked out and saved the additional $5,000 we paid.  So don't take your time,learn as fast as possible and get your selves released.  However, keep in mind that part of the release procedure is to see your financial lady and be prepared to pay any outstanding balances and start paying your first monthly case management fee of $7,600.  Really the $22,000 first months cost is not really for the first month and will in actual fact only last you the first two weeks!  Again, they must be more forthcoming and customer friendly by communicating the actual expected costs to potential clients and not snow them with totally out of whack estimates.

#3.  This cost has nothing to do with the Burzynski clinic as they do not conduct Hickman line (catheter) implants and it must be arranged either before coming to the clinic or in Houston at a local hospital when you arrive.  First, if coming from outside the USA ask your Burzynski rep to try and arrange this ahead of time if possible.  This may not be possible for some patients especially young children; however, we managed to get an appointment with a local clinic surgeon the day after our first visit to the Burzynski clinic who then approved the procedure for Supatra the very next morning.  Cost for the Surgeon's appointment and surgery $1,213.00.  The surgeon conducts the surgery at a local hospital which must be paid as well.  I was whisked into the administrators office before surgery and given an estimated bill of $2035.00 for the hospital costs.  When I questioned what additional costs I could expect she stated that there would be a separate cost for the anesthesiologist (our anesthesiologist costs was $579) and any other drugs or medical supplies that might be needed during surgery.  I was OK with that.  I then waited for a bill at our Houston address.  When not receiving anything I called asking for a final bill and was told that it would be around $10,000!  I nearly flew through the roof and was immediately asking for an explanation of why it cost so much compared to the estimate given to me.  They told me that that was the cost and the $2035 was only an estimate....blah blah.  When I interrupted and said that you can not give such a low ball estimate and then slap someone with hefty bill, he just kept saying that that is what it cost.  I then stated that I would not pay, that I was quoted $2035 with some possible other expense and that the estimate was totally unrealistic compared to what they were trying to charge me now.  Before hanging up I told them that they can pursue me in the UK if they want to but I would not pay.  They then called me back about ten minutes later and said that they found some 'clerical errors' and that they would only charge me the first quoted estimate amount.  All's good, although I am still waiting to get the finalized bill in the mail!

I found out later from two other UK couples that came to the clinic after us that they were sent to a different hospital and they had to pay $10,000 each.  The moral of the story is to ask and keep prodding the clinics and hospitals you are sent to to determine what the final costs of any procedure will be and don't be afraid to negotiate with them ahead of time as some will reduce prices especially if they know you are not insured (called self pay).  Last, don't be afraid to play hard ball and refuse payment (after the fact) as all medical establishments in the US (as I have been told by other Americans) are out to steal your money with outrageous quotes, deposit demands, and final bills that they stick people with.  I just don't understand how Americans live with this system?

#4.  This cost is not associated with the Burzynski clinic and appointments must be arranged once in Houston.  The costs for this procedure can very widely as well.  As an example, if your child is too young or uncomfortable undergoing an MRI scan then they must be sedated and this costs quite a bit more.  Our cost was as advertised and we had no surprises here other then the fact that it is so expensive.  This same MRI scan would have cost us 5-600 pounds in the UK at a private hospital.

#5.  This was the extra costs we incurred for three weeks of training and treatment at the Burzynski clinic.  My complaint here is that if this is the average cost, as we had no out of ordinary situations that required additional expenses, then why can't they provide more accurate quotes of the first three weeks cost to perspective patients?  In fact, why do they even say that the quote is for the first month as it clearly is not even for three weeks.  We ended up doing 22 days of training/treatment and could have easily been finished within 10-12 days.  Be aware of this and get your training finished as soon as you can and go through your bill item by item to ensure you are not being charged for something you did not get or use.

#6.  This fee is a case management fee charged on a monthly basis.  You can check with the Burzynski rep you are dealing with or on their website to see what this fee covers.  The key point is that it is supposed to be a once a month flat fee and therefore you should not be surprised with other fees or supply costs.  The only caveat to this is if you dramatically exceed what you are reasonably expected to consume in supplies then it will start costing you, but again the financial person or supply person you deal with at the clinic should be letting you know this ahead of time.  Additionally, their literature and their rep provided me with written documentation that this monthly fee would include shipping costs.  Shipping costs can be very expensive as the antineoplaston is a liquid and hence heavy.  As an example, we were quoted a cost of approx. $1000 to $1500 for shipping a months supply to the UK.  Why were we shown this cost?  Because after arriving here they tried to play a fast one and tell all the clients that shipping was an extra cost as they were being released from training.  Everyone of course complained and I showed them written proof via emails and some of their own documents that stated otherwise.  Then they stated that this only recently came about because it costs too much to ship the stuff; however, we are not their first clientele - how could they not know this already.  Second, since when does a company just dramatically increase their prices without forewarning their customers and then when it is increased continue to advertise otherwise?  Its just not done and as far as I am concerned this basic business fundamentals, unless of course you just simply do not care about your patients and want to be bad mouthed on the Internet.  In the end, after all our complaints the prices stayed the same at $7,600 per month.

Final comments:

It is important that when you decide to undergo this treatment, and I do think it is worth trying, make sure you ask questions and if possible get things in writing.  To be sure, I did this but yet was still led a stray.  The clinic PR guy assured me that he would rectify some of the issues I raised but in order to make sure that others are not blind sided like we were I have written this post for others to see.  I hope it helps and hope that should they just be blowing sunshine up my know what... that others will see this and keep them on the up and up and hold them to account.  As I stated to them, all I want is an honest up front approach of what the costs are and what additional costs we are likely to incur so that we can make an informed decision and plan ahead with regard to sourcing funds.

I hope this outline will help others to understand what they can expect to pay and to watch out for the US medical establishment as they charge extraordinary prices for their services, which would cost much less in other countries, even on the private sector.

Warm regards,



  1. I live in the US and our medical system is made for the benefit of the owners of hospitals and pharmacies. It is not for the people, you have to fight tooth and nail to get good clean service and not to be billed for services not rendered or double charged. We put up with it because we have very little power. Corporations control our government and people in power. We are divided and too busy trying to survive to rise up United.

  2. Curious....Are you cancer free now?

    1. That is my question. Although she recommends this treatment, which may mean she was helped, what exactly were her results?

    2. First, I am a male and Supatra's dad. Second, your question is clearly answered in this blog. All you have to do is review the last few entries and you would quickly see that my daughter is not Cancer free and passed away from her affliction. In my opinion the antineoplastins helped prolong her life. The radiation helped slow the progression but it was not until we started the antineoplastons that we actually had a reduction in the tumour. The antineoplastons then helped to keep the tumour stable for a period of time that I think helped keep her alive for another 6-8 months. Unfortunately, like other cancer treatments the antineoplastons only seemed to help when first started but could not over come the complex DIPG tumour growing pattern. In all the other cases I was following I do not think it has cured anyone - at least not the young children or those with the fast growing tumours. There are some older children with a slower growing variety that it seems to have helped but I stopped following them several years ago. There is nothing for DIPG but they are starting to make some research inroads. However, if I had to do it over again I certainly would as it gave us more time with Supatra, another birthday, more family outings, etc. I certainly hope they start coming out with some new treatments soon.

  3. Just want to thank you for the time and effort you put into this blog. It is very difficult navigating the alternative and western med treatments when diagnosed with such a devastating disease. I know your post will help others make an informed decision. So sorry to hear your daughter did not win her battle. You are obviously a great dad and wonderful, caring person!

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