How pharma can support patients: Danish Mazhar

This is the latest in a series of interviews with members of Doctors.net.uk, part of the M3 group, about pharma's role in supporting patients.

In today's update, Consultant Medical Oncologist at Addenbrookes Hospital talks to pharmaphorum about advances in his specialist field of urological cancers, and in particular prostate cancer.

What are the biggest challenges in prostate cancer treatment in terms of how pharma companies might be able to help?

While there have been a number of new treatments in recent years, there is still lots more scope for improving the outlook for patients - I am thinking of advanced prostate cancer in particular.

The other headline issue is availability and access to these new drugs on the NHS. Most of these new agents have a very high price, and I think the industry could help by discounting drugs. I'd like to see a more realistic framework for prices – it is inevitable that pricing will have a big impact on whether NICE will approve it.

This is part of a wider health economic debate, but I'd like to see some more realistic pricing and discounting. I'd also like to see more access through shared risk schemes and compassionate use programmes, which can make a big difference to patients.

How difficult would it be to set up a risk-sharing scheme based on patient response to a certain drug?

It is not that straightforward, because in prostate cancer there are lots of different measures of response from patients – a response to radiology, or in a blood test. Scans may be showing one thing, but the patient will say they feel much better. So a risk-sharing scheme might not be easy to set up, but it would certainly be helpful in principle.

NICE is currently reviewing a new prostate cancer drug, and uncertainty about this, and difficulties in using several new agents can be frustrating when you are trying to help patients.

Of course we also have the Cancer Drugs Fund, which has been very welcome, and gives patients early access to drugs they wouldn't have received. But there are restrictions in place in the CDF on this new agent, so the Fund can't address all these funding issues.

Can pharma help improve adherence rates? Can you name any companies that are taking the lead in this?

Patients with cancer are generally well motivated to take their medicines, so non-compliance is not as great as in other therapy areas. Most non-compliance in my field is related to toxicity and side-effects, so more patient education can definitely help.

I would like to see more patient-directed information from companies – there are relatively few companies that have an information sheet that is easy to read and talks about managing side effects. It would be useful to have a DVD to give to patients, for example. The company behind Zytiga [Janssen-Cilag] has produced a very nice information pack for patients.

This sort of thing probably does help compliance indirectly – I think the patients will be more prepared for what lies ahead, so I'd like to see more of this kind of thing.

Is there a role for pharma in helping to educate patients about their condition? What are companies doing? Do any stand out?

I don't think manufacturers have much information for patients. These days patients are often very internet savvy, so they are frequently looking for that information online.

Awareness of prostate cancer has grown a lot in recent years, hasn't it?

Yes, overall public awareness has grown, and awareness of prostate cancer and lung cancer has started to catch up with better known ones like breast cancer. It would be good to see pharma supporting patient groups – in our local area we have got a very active patient support group for prostate cancer. This has come about through local patients and their families, which is great, but that means the help available can be very sporadic.

My hospital, Addenbrookes, has worked with the patient group to give educational talks from specialist nurses, radiographers and medical oncologists like me, but there is room for much more of this.

How do patients regard the industry, and do any companies stand out in terms of reputation?

I think patients are fairly disconnected from pharma – they won't necessarily have a big interest in them. Patients taking hormonal therapy over the long term will probably know the brand name of their treatment, but wouldn't recall the name of the company.

What kind of joint working projects with the NHS would you like to see pharma companies getting involved in?

This is one area where we've had some fruitful interactions with the industry over the years – audits and service evaluations and local research projects, for example. That is all very positive and helpful, especially when it is difficult to get funding from NHS sources.

Companies have also been supportive of educational programmes, especially in disease areas where their drug fits in. Pharma has also helped in disseminating information about drugs to primary care professionals.

Pharma can really help to educate GPs, who frequently monitor the toxicity and side effects of these new drugs. GPs will be taking blood tests and blood pressure, so it would be good to see educational events for them as well. I'd like to create better links with primary care, and I think pharma can play a role in facilitating that.

We have had help from companies in carrying out audits of drugs and their usage – we have to do this to comply with NICE guidance. The industry can also help with more far-reaching, wider service evaluation, which might for instance build up a picture of treatment options. That's useful for us, and of course the companies get something out of it as well.

There are a few specific areas of service development where companies could provide help. Patients taking certain prostate cancer medicines need to have specific toxicity testing, which means they visit clinic quite regularly.

Our main clinics are choc-full with other patients, so maybe some of those needing tests could be moved to a different clinic, led by a nurse specialist, for example.

Pharma companies could help us establish a business case for setting this up – putting in this bid for funding to the Clinical Commissioning Group (CCG) takes a lot of time and effort.

I think it would be a step too far for pharma to fund this nurse provision directly, but providing administrative support to help build a business case would be invaluable; this sort of project is inevitably a lower priority amid all the clinical priorities.

What is the single biggest thing pharma could do to make your job easier?

I think the headline issue is improving access to drugs. We understand that pharma has to recoup its investment, and that they need to charge a premium for more effective treatments, but very high prices are prohibitive.

If the prices were set lower, it may well facilitate greater access to these drugs - ultimately the NICE committee must consider price alongside efficacy and impact on quality of life.

What kind of online resources are most valuable?'

In relation to doctors and other healthcare professionals, these are mainly educational (e.g. e-medicine, pubmed.org, doctors.net.uk). For patients, there is an abundance of information available on the internet much of which is unqualified or poor quality. As physicians, we do direct patients to reputable websites (in Oncology, the MacMillan website is very good), but there is scope for further developing good quality online materials directed at patients.

About the interviewee:

Danish Mazhar is a Consultant Medical Oncologist at Addenbrookes Hospital specialising in urological cancers, and in particular prostate cancer.

This article was co-ordinated by Doctors.net.uk, the UK's largest and most active online professional network of doctors. It is part of the M3 network, which operates in the US, Asia and Europe with more than 1 million physician doctor members globally via its websites such as M3.com, MDLinx, Medigate and Doctors.net.uk.

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