Meet Phoebe Scopes, First MS Patient from Abroad to Undergo HSCT in Moscow

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Hematopoietic stem cell transplantation, or HSCT for short, is provided at various centers around the world to a mix of people with multiple sclerosis.

As regular readers know, two months ago I visited the impressive facilities of the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow. There, besides meeting Denis Fedorenko, MD, and his staff, I was able to mix with patients from the U.S., Great Britain, Australia, Norway and Italy.

But the Moscow center did not start out treating international clients. On my return home, I  got in touch with a woman who was the very first patient from another country (Great Britain) to be given HSCT for multiple sclerosis.

Her name is Phoebe Scopes. She is 46 years old and lives in London. This is the first part of her story, exactly as she told me.

Ian: Phoebe, what was your MS history prior to HSCT?

Phoebe: After experiencing almost a year of intermittent sensory abnormalities and bouts of fatigue, I was eventually diagnosed with relapsing-remitting multiple sclerosis in early 2008. With exception to these episodes, I was free of any disability during this time and, for a while, I merely considered MS as a minor and occasional interruption in my life.

Phoebe Scopes

Before diagnosis, I had heard of MS but had no idea what it was. But knowing more about it now, I understand that I was experiencing small, infrequent relapses. Thinking back, it is also extremely likely that the optic neuritis I experienced briefly six years before diagnosis was a sign and had occurred during the benign stage of disease.

I am a mother, wife and designer, and was very fit and active. I cycled six miles a day to and from work, I was a fitness boxer for 13 years and, in early 2009, a year after diagnosis — now with an EDSS of about 3.0 — I took part in a 100-km, eight-day trek across the Sahara desert. The trek was extremely challenging, but I had one of the best experiences of my life. The Sahara trek was one of those things on my bucket list, so I was also very grateful to have been able to do this before further disease accumulation.

Having experienced and overcome various illnesses growing up, I just considered MS as another one of those medical hurdles that I needed to jump over. I was no stranger to hospitals, illnesses and treatments, but for over 10 years, I had been drug- and symptom-free, always opting for nutritional intervention to maintain well-being.

My initial relationship with medications to treat those conditions brought a host of side effects, so I was reluctant to use anything for my MS, but felt overwhelmed about having this ‘incurable’ disease. One such side effect on some of the MS drugs was feeling very tired and drowsy all the time, which seemed to disable and restrict me more than the relapses I was having. So, I declined all the other drugs being offered by my neurologist, who regularly urged me to start taking them.

I would turn up to [the] clinic with articles, or would ring my neurologist to tell him about my findings regarding the drugs he wanted me to take.  The articles usually, to an extent, contradicted his information so I think that my neurologist considered me a bit of a troublemaker! So, instead of the drugs, I started researching and looking at other therapies that could help arrest my MS and tackle minor difficulties that I was beginning to encounter.

My research took me and my husband to various places in Europe and the United States, where I met and spoke with some interesting people. And while the therapies I had were initially effective, their results were short-lived. Some might call this the placebo-effect, and maybe this was the case with some, but not all, the therapies.

I just think that MS is a very complex disease of which no two people are affected in the same way, and most of the time, some of these therapies or treatments need to be repeated a few times before they stick!

Next week, I move to 2009 and beyond in Part 2 of Phoebe’s story.

This story, written by me, was first published by Multiple Sclerosis News Today.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

New drugs to face affordability test

Proposed changes to the UK’s drug approval process should be the subject of an honest debate according the country’s Multiple Sclerosis Society.

The changes will mean the National Health Service (NHS) in England will assess how much it can afford to pay for new drugs.

Under the plan, new drugs that are expected to cost the NHS more than £20 million a year would be subject to a ‘budget impact test’.

If drugs are considered to be cost effective by the National Institute for Health and Care Excellence (NICE)  but expensive for NHS England’s budget, they could face delays or restrictions on being introduced. To me, this seems to turning the clock back on health care by several years.

Pic: MS Society.

Pic: MS Society.

Based on what is so far known about the plans now, the MS Society believe it’s unlikely that existing MS treatments available on the NHS would be affected by these changes. However, it wants to make sure that any new MS treatments aren’t rationed or restricted due to their cost.

On the society’s website, it says that an affordability test would be a big change in the way new treatments are assessed. It continues: “Currently, new drugs are tested for value for money. This means the potential benefits of a new drug are considered in relation to its cost. How much the NHS can afford to pay for the drug is not tested.”

The society’s assistant director of external affairs Ian Fannon at the said: “People with MS need access to effective treatments as quickly as possible – this is essential to managing the condition, slowing progression and improving quality of life. Not only does this prevent avoidable harm, it reduces cost for the NHS in the long term.

“We do understand the NHS is under financial pressure but the case for increasing investment in the NHS grows stronger by the day. Ever tightening rationing could have serious consequences for those who could benefit from new treatments. We need an honest debate about this.

“Equally, this poses a challenge to the pharmaceutical industry to ensure the price they offer the NHS for their drugs is fair and reasonable.

“We need to examine the details of these proposals more closely and will be responding in full to the consultation.”

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Danger, corruption and drugs but no rock and roll

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Danger is part of an F1 driver’s life. Carlos Sainz survived this crash during practice for the Russian Grand Prix but other safety lapses need attention. (Pic: Rex)

In life there will always be lots of ups and downs, just ask any sportsman or woman, but sport in general seems to be going through some very hard times at the moment.

Thankfully, the troubles are varied, there does not appear to be one underlying cause. In fact, there are many; so many that it is impossible to mention them all here. That being the case, my remarks will be confined to just a few of them.

Drug-taking has created problems in more than one sport, with athletics and cycling bodies being determined to stamp it out. Both international organisations have chosen new presidents, coincidentally both British, with Brian Cookson now in charge of cycling while Lord Coe is now leading athletics. As Sebastion Coe, he won middle-distance Olympic gold medals in 1980 and 1984.

On being elected in September two years ago, Cookson said: “My first priorities as president will be to make anti-doping procedures in cycling fully independent……..(and) to ensure a swift investigation into cycling’s doping culture.”

Meanwhile Coe’s attitude to drugs in athletics can be shown by his words on being elected in August this year. He said: “There is a zero tolerance to abuse of doping in my sport and I will maintain that to the very highest level of vigilance.”

But the problems in those two sports combined are dwarfed by the goings-on in the world of international football, or soccer, this time not by the players but those who are in charge.

There have been allegations of corruption, illegal payments, unfavourable contracts and vote-buying in the run up to the decisions on where to hold the next two World Cup tournaments.

Internal investigations have taken place, criminal proceedings have been started in Switzerland and the USA, arrests have been made and extraditions started, It’s a mess.

Everyone involved has denied any wrong-doing but now FIFA’s Ethics Committee has suspended international president Sebb Blatter and UEFA (European) president Michel Platini because of criminal investigations.

I have no idea where this is all going to end, how high up the tree the allegations will be proved, but one thing is needed – transparency. Football fans everywhere need to be assured that all the guilty have been removed and steps taken to ensure that nothing like it can ever happen again.

Formula 1, the pinnacle of world motorsport, has its own issues but not of the kind plaguing other sports. In motor racing, the problems seem more about management and engineering shortcomings. The breakdown in the relationship between the Red Bull team and its engine provider Renault is one example of the latter.

The division of F1 income between the teams, however, is pure management of the financial side of the sport. The money is not distributed fairly and, although the top teams would say they deserve the lion’s share, the smaller teams really need greater support for their efforts. If F1 management want small teams to survive, they need more of the cash.

Safety is another area that needs greater attention. Great steps have been taken over many years but it has not been enough. Jules Bianchi died as the result of a crash at the Japanese Grand Prix in 2014; on Saturday, Carlos Sainz suffered a high speed crash in the final practice for the Russian Grand Prix and this just one day after diesel oil was spilled on the track by a truck – although those events do not appear to be connected. And you can add to that the spectacle of an F1 fan walking along the track during this year’s Japanese Grand Prix!

For a sport that prides itself on doing all it can to enhance the safety of everyone involved, whether in-car, in the pit lane and paddock or spectator areas, it is clearly not enough.

I could go on, about deflated balls in American Football and a lot more, but don’t want to risk becoming boring. It all needs to be fixed NOW.