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Ronny Allan
Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US).
I think after 163 injections (as of May 2023), I think it’s safe to say I’m now ‘at home’ with Lanreotide (Somatuline Autogel – Somatuline Depot elsewhere). I want to talk about Lanreotide here because that is where my experience is. However, below I have included a bit about how patients can get their long-acting Octreotide (Sandostatin LAR) at home too.
I was fortunate enough to have the injection ‘at home’ via an insurance policy for the first 4 years of my treatment. That was handy because it was informal, chatty, and I had excellent ‘continuity of service’ with the same nurse administering 80-85% of those 54 injections. I only had 3 other nurses over that period covering my local nurse’s holiday etc.
When I retired from work, I then had to travel to my local hospital and take my turn amongst the ‘great unwashed’. Don’t get me wrong, I have the greatest respect for the UK NHS. However, it’s also true to say my monthly ‘butt dart’ suddenly became more of a conveyor belt feeling, less chatty but in the main, the continuity effect I enjoyed previously was thrown right out of the window. I had some superb injections, but I also had some ‘not so superb’ ones. There was little continuity as my 33 hospital-administered injections were carried out by 17 different nurses.
If I had to list 6 common discussions between NET patients, issues with their injections of somatostatin analogues would be on the list. Common administration problems with Lanreotide include untrained administrators, fridge problems, incorrect injection sites, pinching instead of stretching, plunge speed, painful injections, and many others. All these issues can be linked to training and continuity. One thing NET patients like is an expert injection by the same person if possible. It’s also true to say that these issues can cause some anxiety among patients leading up to and during the procedure.
Boom!
I was therefore delighted to be added in July 2017 to a service in UK called HOMEZONE+ whereby a trained nurse will come to my house and administer my injection. Although it’s been available for some time, this element of the service has not been particularly well publicised. The drug will arrive a few days prior and be stored in my fridge ready for the injection day. For those worried about transport, the drug arrives by courier in a refrigerated vehicle. The service is provided by a third party via NHS, at no cost to the NHS or the patient, as it is a service funded by Ipsen Ltd. I also heard that some patients receive more than one injection at a time.
Now …… I got wind of this service 6 months prior to joining it but it took me some time to discover what it was all about, despite a lot of ‘digging’. I had previously heard of other elements of this service whereby the drug is delivered directly to patient’s house for self-injection, injection by a trained carer or for injection at a third-party site such as a local GP (PCP). However, the service I’ve signed up for is none of those, this is a service where a trained nurse will come to my house and administer the injection. Happy days. My subscribing hospital (Royal Bournemouth) is actively promoting the scheme to patients being administered Lanreotide. But ….. It was also suggested to me that not all hospitals are making the service available. If this of interest to other UK patients, I suggest you initially make contact with your specialist nurse or doctor and enquire (….. and if it was me, I would ask why not if they’re not making it available!). I’ve documented all I know but happy to chat more with UK patients about the scheme.
How’s it going so far?
On 14 April 2020, I had my 38th ‘HomeZone+ nurse administered injection and a permanent nurse was allocated to my area. It’s a first-class service from of the several UK providers – Sciensus (formerly Healthcare at Home (HAH)). I’m told which day it will arrive, and I receive two text messages with timings, so it goes from the window of a particular day to a window of 4 hours and then 2 hours, which allows me to get on with my life. The Nurse separately makes an appointment to come and administer the injection at an approximate time. This works excellently too. I set an alarm to get it out of the fridge (I allow 60 minutes for maximum flexibility. The injection is given very efficiently, and my next appointment is made ready 28 days ahead. I also found out that sharps box provision and collection is available through the programme, another bonus.
What about Lanreotide at home outside UK?
I researched to see if other countries have something similar for Somatuline (Lanreotide) – please note not all patients will be eligible so you need to check first. I’m thankful to the patients who provided me with the details – keep me updated please, I will add/update as required.
1. The Netherlands. I attended ENETS Barcelona and sat in on a presentation from a Nurse in The Netherlands who described a similar scheme. The presentation was entitled Home Injection Service for Somatostatin Analogues so may also include Octreotide. Contact is Wanda Geilvoet at the Erasmus Medical Centre in Rotterdam.
2. USA. Ipsen US appears to have a similar scheme through their Ipsen Cares program. It’s called “Home Health Administration (HHA)”. This is available for patients who are unable to receive their Somatuline Depot injections at the doctor’s office. Eligible patients can have a nurse visit their homes to administer their injections. There is no cost to the patient for this option. HHA must be requested by the doctor and the patient must be enrolled in IPSEN CARES. The Nurse HHA Program is an additional offering of IPSEN CARES available via a doctor for all eligible patients prescribed Somatuline Depot.
• A physician must prescribe Somatuline Depot to be administered by Nurse
Home Health Administration for the patient.
• The program is available to most patients covered by commercial insurance
plans.
• Patients may not participate if prescriptions are eligible to be paid in part or
full by any state or federally funded programs, including, but not limited to
Medicare or Medicaid, VA, DOD, or TRICARE.
• Residents of Massachusetts, Michigan, Minnesota, and Rhode Island are not
eligible.
Click here for more details. Go to “For Patients/Caregivers” and then “Additional Resources” and then scroll down to see “Injections at Home”. For those having difficulty, this is what you will find:
At this link it currently (May 2023) says “Nurse Home Health Administration (NHHA) is available for patients who have difficulty receiving their Somatuline Depot injections at their doctor’s office. Eligible* patients can have an IPSEN CARES nurse visit their site of choice to administer their injections. There is no cost to the patient for this option. NHHA must be requested by the doctor and the patient must be enrolled in IPSEN CARES. A form needs to be completed Download Now
*Patient Eligibility for Nurse Home Healthcare Administration: A physician must prescribe Somatuline Depot to be administered by Home Health Administration for the patient. The program is available to most patients covered by commercial insurance plans. Patients are not eligible if prescriptions are paid in part or fully by any state or federally funded programs, including, but not limited to, Medicare or Medicaid, VA, DoD or TRICARE. Residents of Massachusetts, Michigan, Minnesota, and Rhode Island are not eligible.
Note site also contains more than just injections at home, it also provides other benefits such as help with copay.
Note: Ipsen briefly opened up this program to all during the Covid pandemic, but I believe it’s now been withdrawn.
3. Canada. The Ipsen Canada site is spare but according to one local patient, it’s possible to arrange for delivery and administration of the injection. There may be differences between provinces so always ask what’s available. Click here
4. Australia. There seems to be a programme called ‘Assist’. Click here for more details.
5. Republic of Ireland. They have the same service as UK, also called HomeZone. They will send a trained nurse out to your home monthly to do the injection for you free of charge. To arrange, the number is 01 4291820
6. Germany. HOMEZONE service is available in Germany. Most doctors are not aware of it, you will need to contact Ipsen Germany and ask them to arrange the service with your oncologist.
I will add other locations as and when I find out.
Let’s share data!
I’m sure there must be more countries involved so please let me know. In fact, would UK patients let me know if you are on the ‘Homezone’ scheme where a nurse comes to your house and administers the drug, and via which hospital was this arranged? I’ll update the blog so we can all find out about it.
SANDOSTATIN LAR (OCTREOTIDE) PROGRAMMES
In USA, the Mobile Administration Program offers administration of Sandostatin® LAR Depot (octreotide acetate) for injectable suspension by a registered nurse at a time and place convenient for your eligible patients* so they continue to receive the correct prescribed dose at the right time. †
For more information, call 1-800-282-7630 or download the enrollment form.
*Limitations apply. Available only for patients with commercial insurance. Program not available for patients with Medicare, Medicaid, or any other federal or state program. Program not available for residents of Massachusetts, Michigan, Minnesota, or Rhode Island.
†The program does not replace your care or the authority of the prescribing physician. Patients still keep their regularly scheduled physician checkups. First dose must be administered by prescribing physician.
In countries other than USA, please click here to see how this program works and a list of national offices where you can find out if it is available where you live. click here.
Australia – 2nd June 2023. Anecdotal update from an Australian patient. “Australia’s home program for Octreotide has stopped, from end April 2023. Patients now have to source their own way of getting their injection – either at GP, specialist, etc. Novartis decided that with some generic brands being introduced, it wasn’t in their best interest to continue with the program, which was unfortunate for the recipients/patients.“
Related reading:
You may also appreciate my other blog posts on Somatostatin Analogues in general and Lanreotide (Somatuline):
12 years of Lanreotide – click here
Lanreotide – it’s calling the shots – click here
Lanreotide vs Octreotide – click here
PoNETry – An Ode to Lanreotide – click here
For a video showing how Lanreotide works – click here
Somatostatin Analogues and Delivery Methods in the Pipeline – click here
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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