Genzyme Turkey’s general manager discusses diagnosis and treatment access issues for rare diseases, the need for prioritization of patient welfare in all aspects of health policy, and the importance of the Turkish market and its potential to Genzyme globally.

For rare diseases, do Turkish patients have adequate access to the relevant specialists and facilities, and what is Genzyme doing to help?

Unlike some specialties, for most rare diseases the target group of physicians and laboratories are very limited. Once you inform and educate that core group, you know where to go and who to educate next because everyone else who is relevant networks with these key specialists. A physician might see Gaucher disease once a month, and he or she still might not even consider it because it is easily misdiagnosed and confused with at least twenty different diseases, but if you can create some awareness and keep the disease an active topic in the physicians’ minds, then they are more likely to consider it. Based on the links we have and on how many patients are being diagnosed and treated, I think we have done very well.

If you look at the Eastern part of Turkey, a third of the population is there and there is very high consanguinity rate, meaning that marriages between relatives is quite common, which results in higher rates of genetic disorders. People cannot be diagnosed easily due to the nature of the disease, so patients have to travel a lot to more major medical centers. We are working on addressing these issues on two fronts; first, we are organizing centers so patients have better access to diagnostic testing, and second, we are trying to raise the awareness of these diseases so that physicians are more likely to consider that their patients might have one of the rare conditions and have them tested.

How would you assess the overall healthcare ability to diagnose and treat MS patients?

MS is a difficult disease. There is no cure, but it is possible to stabilize the disease at a certain level and prevent it from having more serious effects. However, market access in MS is difficult, and new medications are being limited from entering the market. Normally in Turkey, products that have no competitor and treat an unmet medical need are given early access and special reimbursed in while normal registration and reimbursement progresses; since there are already many MS treatments on the market, innovative MS treatments are not being given early access even though the incremental improvement in efficacy and patient outcomes over established treatments are very significant.

Is the special access program the right structure for bringing these types of medications?

I think that there has to be one vessel of access in terms of non-registered, non-launched products, which at this stage is the Turkish Pharmacist Association. Recently, the government has announced that certain other wholesalers can import these products, but it has not properly been implemented. The market is becoming a bit chaotic because the Turkish Pharmacy Association has a certain legal status and authorization to import these medications, and then there is one or more random wholesalers who also import the same product from different source in other countries, and then start a price war in Turkey. This is affecting supply flows, and the disturbance could potentially cause treatment delays, and if that were to happen, it would cause significant burdens to the patient. The government needs to define certain pathways in order ensure that patients are coming first, because sometimes concerns over price are threatening patient welfare.

The time is nearing for the government and industry to negotiate a new ‘win-win’ situation with regards to pricing, and alternative reimbursement have been discussed. What is the minimum you would want to see out of any such reforms or changes?

First of all, the win-win situation should be for the sake of patients. The registration and reimbursement timelines have to be shorter, and patients have to be given more favor in terms of accessing their medications. The government has done a lot, and registration timelines are accelerating. For example, if you look at one of our MS products, they have based its priority upon the level of priority it is receiving in Europe. However, that is just the registration part; reimbursement is still taking a long time, and this delays patients’ access to the treatment.

How would you describe Genzyme’s position within Sanofi, and Genzyme Turkey’s position within Genzyme?

Genzyme is one of the top five priority businesses for Sanofi, and it is understood that the nature of our business is different than overall big pharma. Rare disease markets require a very different selling style and strategy than big pharma as we must interact face to face and hand in hand with each partner. Genzyme is a crucial component of Sanofi, and will play a significant role in the company’s future, and this is a message that our former CEO Chris Viehbacher made exceedingly clear to the whole organization at the time of integration.

As for Genzyme Turkey, we are already the top Genzyme affiliate in the Intercontinental region for sales, are ranked sixth or seventh in Europe, and are in first place for some specific products.

Is your company tempted to come and open manufacturing here in Turkey?

We already have a manufacturing site here with Sanofi, and it is very possible that Genzyme could localize some final dosage form production to this facility.

For Turkey, for biotech and biosimilars, do you feel that there is potential to develop a hub at this point?

The biosimilar market is difficult in Turkey, as producers are referencing the original product that they are mimicking, but in truth we don’t really know what is in it. From my experience with the physicians, they will not trust a product referencing to another without its own clinical studies. They would like to see the trials, the proof of the effect and the reliability of the coming product. Of course, there might be a minority who will be persuaded by the cheaper price or with the investment, and some sporadic sales might be possible, but not with continuity.

As for biotech, at the moment Turkey does not have the necessary infrastructure, however, looking at president’s Vision 2023 strategies and relevant development plans there is certainly the political will, the technical know-how, and overall capability to accelerate our industry to the top ten.

What were some of the accomplishments and the initiatives that you received a Phoenix award for?

In the beginning of 2009, Genzyme faced a production challenge. We had a 2-3 year period before we were operating at full capacity again, during which we had to provide medications from our inventories to the patients. However, we recovered very quickly and came back stronger than before. Meanwhile, there was the Sanofi deal, which was a needed period of change and we had to adapt to it in order to survive. We had to continue doing our jobs as best as possible because we are not delivering to Sanofi or to Genzyme, we are delivering to patients. That is Genzyme’s mission, patients are at the heart of what we do, and we will continue to serve our patients through thick and thin.

Turkey was started very quickly, with fast paced growth until 2009 when the production problem occurred. The Phoenix symbolizes the rebirth of the Genzyme following this challenge, and as one of the fastest recovering affiliates Genzyme Turkey was given the Phoenix award. It is given every year to the most successful leader that grows their affiliate most or makes significant improvements. With us, after 2009, and with the Sanofi integration, we doubled our revenues in a very short time with a relatively small staff. Of course, this award was earned by my team more than by myself, and I see it as a recognition of all of our hard work, because no one can achieve anything alone.

How do you see Genzyme in five years’ time?

The big step that we have to take is bringing our MS portfolio to Turkey. We would like to implement the full portfolio here, and bring two products to this market. Our goal is to have MS make up a big portion of our sales in three years, and I am optimistic as many physicians have been waiting for our products for a while and we will be starting to invest in the product launch very soon. Of course, we will also work to continue to grow our rare disease business.

Most importantly, we want to help improve the lives of our patients, and the most important part of it is working to ensure that the patients that need our medications have access to them.

Why is Genzyme a great company to work for?

I am a medical doctor but I only practiced for a year and a half before deciding to get into the pharma sector, with Novo Nordisk. My experience with Genzyme has been different because in the rare disease field pharma companies are much closer to patients, patient associations, and physicians, so I feel that I better utilize my medical degree. Before the regulations changed, we were in direct contact with patients and their families, and the patients were rare enough that we knew each one by name.

The treatments that Genzyme produces don’t just stop the progression of a disease, or slow its progression; in many cases we can help the patient recover to a large extent if there are no permanent defects; for Gaucher disease, our enzyme treatment helps eliminate the glucocerebroside that built up in the body, allowing the liver to function normally. Since the patient outcomes are quite positive, we like to call our products “Medicines that put a smile on faces due to significant positive outcomes.”


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