[sueharleyParticipant]

Hi Everyone,

I am planning to visit India to get Lenalidomide (Revlimid) as a maintenance chemo. I have already found a hospital and a haemotologist who is happy to see me and prescribe 6 months of Lenalidomide. My question is, has anyone else gone down this route and were there any problems bringing medication back into the UK? Also can I travel on a tourist visa or will I need a medical visa? I am concerned that it is going to take too long to get a medical visa as Iit requires a hospital appointment letter from the Indian hospital and this could take a while to arrive. I am planning on going in 3 weeks time and have already told work that this is when I am going.

Any help or advice appreciated.

 

[mrsbParticipant]

Hi sue,

may I ask why you have to go to India to get this ? My mum is starting this drug next week here.

Thanks

sara

[sueharleyParticipant]

Hi Sara,

Revlimid (Lenalidomide) is not available on NHS as a maintenance chemo in England,  although I think it is possible to get it on relapse. Was your mum was part of the Myeloma XI trial? If patients received Revlimid as part of the trial I believe they are entitled to have it funded by the NHS for maintenance. Also the rules in Wales and Scotland are slightly different and Revlimid can be used for first line treatment for some patients. At what stage is your mum in her treatment? Obviously it would be very interesting if different hospitals are interpreting the NICE guidelines in different ways.

 

Sue

 

 

[briananParticipant]

Hi Sue

Did you manage to get Lanalidomide back from India?

I would be really grateful if you could say what happened.

All the best

Brian

[sueharleyParticipant]

Hi Brian,

I did go to India and have approx 8 months supply of Lenalidomide. It was all very straightforward in the end, although the process of organising it was quite stressful. I had a medical visa although the Indian hospital thought I could have travelled on a tourist visa as well. The main problem I had was getting travel insurance as most exclude travelling for the purpose of medical care. I have my bloods monitored monthly and so far everything is going well. I am not sure whether it will be possible to have the next lot shipped to me here when I run out – the Indian hospital are willing to do this but I haven’t been able to work out what happens this end in terms of importing medication. Hope this is helpful to you.

Sue

[mulberryParticipant]

Was your UK haematologist happy to treat you/test you while you are on lenalidomide from India. Presumably this is a generic version – how did you satisfy yourself about the quality and effectiveness compared with the celgene product?
I am starting treatment with lenalidomide (VRD) under copayments scheme but it look as if I will have to pay VAT. If this is true I fear the financial burden will just be too great for me (apart from the qualms of paying VAT on a life preserving drug).
How did you choose the hospital and haematologist in India?
Hope all is going well for you
Jane

[kwallermyersParticipant]

Hi
I had 4 cycles of VRD for which we had a copayment arrangement for the Lenalidomide. They charged us VAT so 21 capsules for one cycle cost £5172.57! Fortunately I had critical illness insurance. Celgene make about $12 billion a year from Lenalidomide. I then had autologous stem cell transplant about two months later. I am looking into maintenance with Lenalidomide as both US and European studies have shown significant extension of remission times, in fact the US study showed a doubling of remission period. I have ordered Lenalidomide made by Natco in India. It is fairly simple to order online. 30 capsules of 10mg costs 121 euros including shipping. Natco have a licence from Celgene to produce Lenalidomide for the developing world and Celgene have recently agreed that Natco can export their Lenalidomide to the US from 2022 onwards, one year before the US patent expires. The European patent, I believe, expires in 2019 but pharmaceutical companies have a few tricks up their sleeves to extend patents so we shall see. My consultant has a number of patients who get Lenalidomide from India and he said it seems to be quite genuine. If anyone is interested look up Bonhoa Pharmacy.

[briananParticipant]

Hi Sue

Many thanks for your reply of Aug 10th – I’ve only just seen it as I’ve been away.

One question: how did you find the details of the Indian hospital where you were treated?

All the best

Brian

[susieParticipant]

Hi all.

I’ve been onto the Indian website and am totally amazed at their prices compared to that payed by NHS England. Why on earth they don’t precure drugs from india i dont know, Europe I suppose. They are an absolute fraction of what the NHS pays. Let’s hope that when we are out of europe someone will go down that road. It could open up such hope for us all coz NICE would have no excuse to deny us drugs because of cost.

Best wishes to all.

susie

[mulberryParticipant]

I understand that some of Natco s manufacturing plants comply with US/EU standards, but that others don’t. How can I find out?

Sue, in hindsight did you need to see a MM consultant in India or could you have obtained the lenalidomide by post? I understand that it is legal to import 3 months supply of drugs for personal use. I’m concerned about traveling as far as India not long after SCT.

Did you have any of the drug analysed in UK? I believe the Terrence Higgins Trust analysed 6 samples of a generic HIV drug from 6 Indian pharmacies and found all were genuine, but this still feels quite an issue for me.

Brian, are you contemplating going down this route?

Jane

[jonandclareParticipant]

Any more recent news on this from anyone

[mulberryParticipant]

I am importing lenalidomide from India as maintenance, with my consultants blessing, following SCT in February, I’m now on cycle 5. I am importing through a contact I made who supplies Hep C drugs from India internationally. I have had a sample tested in a university lab, but have been unable to find a lab willing to test multiple samples from myeloma patients generally. This seems to be because labs,even university labs, depend on funding from pharma companies. I have details of the necessary test if anyone needs it. In terms of the Indian lenalidomide, disappointingly I am having the same side effects as I had to a lower dose of lenalidomide as induction therapy, so really look forward to my week off during the 28 day cycles. However I am relieved to be having maintenance, especially since the NICE time table for considering lenalidomide maintenance isn’t until Oct 2020. There are a number of UK myeloma patients getting lenalidomide from India using the same source. However the attitude of myeloma consultants towards this approach seems to vary widely, from some who advice patients ” off the record” to consider buying from India, to those who refuse to treat patients who obtain any drugs outside the NHS. I am happy to share contact details of who I am importing the drug through. If you have a prescription from your consultant it is not necessary to go through a middle person. I have a list of Indian pharmacies who will export Natco Lenalid directly, and the name of one which will supply Dr Reddys Lenangio. Both of these pharmaceutical companies supply generic drugs to the UK market and are poising themselves to take advantage of the myeloma market once lenalidomide comes out of patent. There may be others, but these are the only two I’ve researched.

[jonandclareParticipant]

Thanks for all that info! So if I’ve got this right then I can import it directly from an Indian pharmacy if I have a prescription. I presume that I’d get this from my consultant if he’s willing to do so. Can I ask what you pay for your supply and whether you buy month by month or say a years worth at a time. What’s the legal status of this and do I need some form of approval and or to pay import charges?
Thanks for being so open.

[rosaryParticipant]

Mulberry

If you could share contact details of your supplier for Revlimid/Lenalidomide that would be very helpful

Any more update from those looking into this would be very helpful

[mulberryParticipant]

Importing myeloma (or other cancer drugs) for your own use, or that of a family member, is legal in the UK but not in some other countries. We can import up to 3 months supply at any time.
You may be required to pay an import tax of 30% although this does not always happen in practice.
UK consultants are wary of issuing prescriptions for lenalidomide, although some will let patients co pay (just pay for the one drug, otherwise remaining within NHS) Revlimid through this route costs approx £4000 per cycle. If you do not have a UK prescription an Indian consultant will provide one without you needing to see him/her or visit India. It appears our diagnosis is sufficient.
I read in the international press about an Australian man who is importing curative Hep C drugs into Australia from India. (Headlines such as Indian buyers club) I contacted him and he put me in touch with Nirav Sangoi nirai.dialhealth@gmail.com
Nirav arranges medical tourism as well as acting as intermediary for foreigners buying treatment drugs in India. He obtains prescriptions for me from a hospital then obtains the drug through that hospital pharmacy, according to the paperwork supplied.
I have now bought 7 months supply of lenalidomide in total from him, in 3 consignments. The costs vary a bit depending on the quantity bought and exchange rate, but around £120 per cycle. I have been happy with all the transactions in all respects. I have some minor side effects from the lenalidomide, but none attributable to the source, and they don’t stop me from continuing this maintenance. If and when NICE approve lenalidomide maintenance for patients post SCT my consultant says I will be eligible for NHS funded treatment.
I found it quite daunting to go down this route initially, but for me it has been the right thing as I believe it is extending my current remission phase.
I hope this is helpful.
Jane

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