Several recent stories have caught the industry’s attention and set media imaginations alight, but none moreso than last week’s record-breaking US$3B marketing settlement between pharma giant GlaxoSmithKline and the US government. In short, GSK plead guilty to withholding safety data and illegal marketing practices related to three drugs and agreed to pay US$1B in criminal fines and US$2B to resolve civil complaints with the federal and several state governments. (more…)
Study sheds light on common skin cancers
Tuesday, May 22nd, 2012
“Basal cell carcinoma skin cancer is the most common form of skin cancer”. It’s a common claim and one which is undoubtedly true – non-melanoma skin cancers (or NMSCs) are seen far more frequently than any other form of cancer. Unfortunately, however, due to their frequency, statistics on the incidence of NMSCs (which include basal cell carcinomas, BCCs, and squamous cell carcinomas, SCCs, of the skin) are difficult to find and cross-reference.
Recognising this gap, a research group from the University of Nottingham established a literature review to try and establish what comparable published data could be found to determine the incidence of NMSCs. Whittling down some 3083 publications, the group identified 75 papers which provided suitable information, covering 38 countries from 1955-2007. (more…)
Delivering a therapy for those who need it most: EPP in Switzerland
Thursday, April 26th, 2012
Earlier today we announced that two health insurers in Switzerland had agreed to reimburse SCENESSE® (afamelanotide) for the rare disease erythropoietic protoporphyria (EPP). While this is an encouraging step forward for the program and for Swiss patients, I felt it appropriate to take a moment to discuss the important role that Switzerland has played, and continues to play, in our EPP program.
In 2006 Clinuvel announced that it would commence a new clinical trial program focused on an unknown disease in a small open label study. At the time I noted that our aim was to “provide a prophylactic treatment for [a] debilitating and incurable skin disorder”. (more…)
Living with HV
Wednesday, February 29th, 2012In the final post from the Roosenboom family, and to help recognise Rare Diseases Day, Simone has penned her own piece on her experiences with Hydroa Vacciniforme. We are grateful to the Roosenboom family for being able to share their story.
Hi, all.
My name is Simone and I’m almost fifteen years old. I got ill when I was nearly six; exactly nine years prior to the day I wrote this. You can read all about that in the previous blogs written by my father.
The first years, my illness troubled me, but it got worse when I turned ten years old. The year 2007 turned out to be a horrific year for me. I got a bit older and more aware of myself and the way my surroundings reacted to my appearance. I looked quite scarred and felt that I was different. Quite a lot of people acted in a way that strengthened that feeling: they looked at me with horror. My parents and I got quite upset with that, even to the point that my mother told these people in anger that I was contagious so they would quickly get away from us. I thought it was funny but in the end it didn’t change anything. (more…)
Hang in there! Take back control! (Part 2)
Monday, February 27th, 2012
We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series. In part one of this post Richard described the onset of Simone’s disorder and the road to the diagnosis Hydroa Vacciniforme (HV) some months later.
Our local hospital learned about Simone’s diagnosis with HV and invited us to discuss her condition. They felt that the diagnosis needed confirmation by tests. Yet, as HV itself cannot be confirmed by tests, that meant that Simone would have to undergo a series of examinations to exclude other diseases and disorders. They felt that the diagnosis of HV could be accepted only if all others had been excluded. We learned about some tests being quite painful and harmful to Simone’s skin and took control again: we refused. We decided to accept her having HV and not having her undergo such an ordeal, knowing that even if HV was confirmed, it would change nothing. (more…)
Hang in there! Take back control! (Part 1)
Tuesday, February 21st, 2012
We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series. You can read the first post here: Too rare to diagnose: Hydroa Vacciniforme.
In 2003 our daughter Simone (then almost six years old) was diagnosed with Hydroa Vacciniforme (HV) by a leading Dutch dermatologist with over 35 years of experience. He listened carefully to our story, retreated for a moment to think and consult some books, and then came back and pointed out the page in a book where HV was described. He had never seen it in his life! After over three months Simone’s illness finally had a name and a history, and we felt like having a future again. (more…)
Too rare to diagnose: Hydroa Vacciniforme
Friday, February 17th, 2012
We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series.
This year, 2012, sees calendars with February 29th: a rare day that is only seen once in every four years. Thus it is logical that this day is chosen as the worldwide Rare Diseases Day: a day where extra attention is sought for many rare diseases and disorders from which adults and children suffer every day.
Often the causes of rare diseases aren’t known. There’s often no treatment (yet). That’s why the world needs Rare Diseases Day: to show that these patients too are entitled to care and treatment, like any other. (more…)
Top five sun and skin myths (part 2)
Wednesday, February 15th, 2012
Myth 4: I need lots of sun exposure to create vitamin D
Vitamin D is a contentious topic in modern medicine and something we’ve blogged about regularly. It’s known to play a role in strengthening bones (with low levels known to contribute to rickets and osteomalacia) and has been linked to the prevention of various diseases, including certain cancers. We know that exposure to sunlight is an efficient way for the body to produce vitamin D, however the UV radiation in sunlight also causes sunburn, skin cancer, premature skin aging and other damage. (more…)
MAA: a moment in Clinuvel’s EPP story
Thursday, February 9th, 2012Those who have taken an interest in Clinuvel will have learned with joy that, on Monday February 6th, the company announced its first official filing for SCENESSE® (afamelanotide) with the European Medicines Agency. It has taken our teams around six years to arrive at this point. Benchmarked against peer companies, it is a relatively swift development path for a first-in-class drug; we first publicly announced our erythropoietic protoporphyria (EPP) program in September 2006. It is an opportune moment to reflect briefly on how we reached this milestone and then discuss the steps that must be taken from here. (more…)
Top five sun and skin myths (part 1)
Thursday, February 2nd, 2012
There are a number of misconceptions about the interaction between sunlight and skin. In this two part post we look at what we think are the top five most common sun and skin myths.
Myth 1: I can’t get sunburnt on a cloudy day (more…)
