Equity of Access to Quality Healthcare

1. Equity of Access to Quality Healthcare Health inequalities in the new EU member states and candidate countries

2. Access to quality healthcare in hepatitis patients: a case study AchimKautz European Liver Patients Association

3. About ELPA • An umbrella organisation for patient groups, launched in April 2005, now members in 24 countries • ELPA promotes the interests of liver patients (with a focus on hepatitis) at EU and national level, by • raising the low profile of the liver in relevant EU programmes and initiatives • identifying and disseminating best practice • Close cooperation with medical specialists, i.e. EASL

4. About viral hepatitis • Most common forms of hepatitis: hepatitis B & C (520 million cases of chronic infection globally), • Chronic hepatitis often has no obvious symptoms • Infection with chronic hepatitis is the biggest risk factor for liver cancer, and can also cause cirrhosis and other liver conditions. These follow-on diseases are on the rise.

5. ELPA’s long-standing advocacy goal • Estimated 500 million carriers worldwide • Up to 90% are not aware that they have the infection • Hepatitis is easily prevented, diagnosed and treated, but if it goes undetected, many patients will die a slow and painful death. • ELPA’s goal: Promotion of early diagnosis

6. National Hepatitis Plans in Europe: 2007-2013 • 2007: Hepatitis Plans adopted and implemented in Scotland and France • 2013: • Adopted in Bulgaria • In development in Croatia, Germany, Ireland and Italy • To be developed in Romania and Greece

7. Hepatitis C – the evolving treatment landscape Timeline of key milestones in the treatment of the hepatitis virus (HCV) 100 Approximate viral cure rates (%) 2011 Pegylated interferon + ribavirin + protease inhibitor (DAA) 80 2001 Pegylated interferon + ribavirin 60 1998 Interferon + ribavirin 40 1996 Interferon 48 weeks Over time multiple treatment options have been developed which have improved cure rates and attempted to reduce severe side effects which patients experience with interferon treatment 20 1991 Interferon 24 weeks 0 1990 2000 2010 2020

8. Emerging problem in certain countries: Access “Of course the new treatments are officially approved, but without the private sponsorship of companies, I would not have the chance to see them in real life.” Doctor, Romania “The government refuses the new drugs because of the economic crisis. We are not Germany or France. Here it is cheaper to let patients die than to cure them.” Doctor, Portugal “The costs of the new drugs are higher than the average price of a house. Do you really think the government will sponsor 300.000 houses.” Doctor, Lithuania “More than 50.000 patients need the new drugs, but because of the price only 100 per year will have access” Patient, Estonia “Because of the economic crisis we have only limited access to the new drugs. Although we are a founding member of the EU we feel excluded on health issues” Patient, Italy

9. Controlling hepatitis: Possible solutions to the pricing problem • Innovative drugs need to be launched in all countries; • Establish a voluntary scheme for industry and individual Member States to agree a price which reflects ability and willingness to pay; • Government to guarantee to treat access for patients in need; • Do not export the lower priced drugs to countries where you can sell them for more. They need to benefit the patients in the country in question!

10. ELPA’s Call on EU Policymakers • Fight those health inequalities and overcome those access problems; • All relevant Commission Services: SANCO, Enterprise and Internal Market, need to work together in a task force which is supported by the Presidential Troika and which is observed by the European Parliament!

11. Thankyou!!!