Getting DAAs in the UK: drug access and buying generics

This guide includes many references to DAAs. These new drugs are highly effective and easy to take.

DAAs are recommended in all guidelines, including by NICE and UK commissioners, and these drugs are available free on the NHS.

However, the high price of DAAs – around £30,000 per course – prevents the NHS from treating everyone straight away.

At the current prices, it would cost more than £7,000,000,000 to treat 230,000 people living with HCV in the UK (even though many of these people are not yet diagnosed).

This would be nearly half the total NHS drug budget for all drugs, for all conditions, both in hospitals and from GPs, for the whole UK population.

So rather than universal access that could cure nearly everyone, DAAs are being given to people who have more liver damage first.

By early 2017, the NHS has alreadty treated 10,000 people who mostly had severe liver disease (cirrhosis). Another 10,000 people should be treated by the end of 2017.

Although there are waiting lists, people with coinfection are steadily getting DAA treatment.

The risk of waiting to treat is generally low, but this is not always the case. If cost was not an issue, everyone would be treated. For example, in Australia, and Portugal, and in Egypt with generics, governments have negotiated nationally affordable prices to treat everyone.

Guidelines for access to DAAs

In the UK, NICE recommends access to DAAs based on strong evidence that treatment is highly effective and safe.

All genotypes can be treated by DAAs, and PEG-IFN is no longer recommended.

Some hosptials are restricted for how many people they can treat, but in others, access is good, especially for people with HIV/HCV coinfection.

The choice of DAAs available can vary from month to month depending on price negotiations and where you live in the UK, but all the combinations are good.

Access is perhaps most difficult for people without liver damage but who might have other symptoms – especially if they have been living with HCV for many years.

UK rationing: area and clinic

How quickly you access DAAs in the UK will also depend on where you live (which region or country) and the type of clinic that you attend.

For example, as this guide went to press, waiting times varied betweeen different countires in the UK, and between different clinics in the same cities.

Smaller HCV networks (called Operational Delivery Network or ODN), sometimes have earlier treatment. So in England, the best availability should be in a city that is big enough for a liver unit but not so large that it gets referrals from other units.

Larger centres, where complex and cirrhotic cases are referred to, had more patients when rationing started but now have much shorted wait times. Some smaller centres are treating everyone sooner, regardless of FibroScan score.

Ask your clinic for the approximate waiting time, and how this might change. Ask whether other clinics are shorter.

Changes will continue during 2017. Some clinics might move from having a waiting list of several months to needing to find people to keep their monthly quota.

Also, annectodally, several doctors report that most people with coinfection who are in care are steadily accessing DAAs. People with long-term coinfection should certainly be prioritised for treatment, because of the higher risk for liver cancer and faster HCV progression.

However, DAA access is less good for people who disconnect from care and/or who have ongoing drug and alcohol issues

As more people are treated with DAAs, the access problem will move to harder to reach groups, the small numbers who have had DAA failure and people who become reinfected.

Campaigning for change

If you are not able to get DAA treatment, then ask why.

Write to your doctor, health commissioner and MP.

Link to or start a community campaign to keep informed on any changes.

Most of these new DAAs are not expensive drugs to manufacture.

It costs less than £100 to manufacture a course of DAAs, and yet the NHS is being charged tens of thousands of pounds.

Buying generic DAAs online

Some people are buying generic versions of DAAs instead of waiting for the NHS to provide treatment.

This can be by either visiting a country where generic drugs are available or buying medicines online.

While this might not seem fair, both approaches are perfectly legal in the UK – and are ways to get access to healthcare.

Generic DAAs are similarly effective as patented versions made by originator companies.

Community websites have information about how to do this, including:

www.fixhepc.com

www.i-base.info/qa/10734

Based on current prices on the FixHepC website, the cost for 12 weeks of generic DAA treatment is about US $1600, depending on the drugs and supplier. See Table 5.

Table 5: Generic DAA combinations

Source: FixHepC Buyers Club, March 2017 and EASL guidelines (2016)

Whether you buy meds online or visit another country, it is important to buy DAAs from a reliable supplier.

Your HIV doctor should be able to talk about which drugs would work for you. You will also need appropriate monitoring if you decide to do this. Most doctors are happy to do this, but you will need to ask.

Your doctor can also talk about the individual benefits and risks from early HCV treatment, rather than just waiting for the NHS.

Before you start HCV treatment, you and your doctor will need some basic information to pick the best treatment for you, including whether ribavirin is needed.

This information includes:

• Your general health (routine blood tests, including pregnancy testing, if indicated).
• Your HIV treatment and other medicines you are taking (to avoid drug interactions).
• Your HCV treatment history.
• Your HCV genotype (if you have genotype 1, also your subtype, which will be a letter).
• Whether or not you have cirrhosis.

This information is also important to find out how long you will need treatment – which can vary from 8 to 24 weeks.

Joining a study for access

Another way to access DAAs might be by joining a research study.

In general, drugs that are in late stage development (phase 3) already have data showing they might be as effective and safe as approved DAAs.

Many studies are looking for people with early or mild liver disease (ie who can not easily get treatment based on current UK guidelines).

Last updated: 17 August 2017.