My journey through the disorienting maze of accessing HCV treatment in Hungary started little more than two years ago when I was diagnosed with HCV. Although first shocked and terrified, I was not exactly surprised as I was leading a rough life at the time: Going through depression, family and health issues, work pressure - substance use and compulsive sex were no strangers to my life.
However, the real shock came a little later when a FibroScan test and a practical examination by the doctor revealed liver damage at F3 and S2. The official reading was that I had had advanced liver damage only after about a year of HCV, and we were all wondering how this was possible at all. Being HIV and HCV co-infected meant that I had a very slim chance of clearing HCV spontaneously, and it didn’t happen. I could vaguely remember a period a couple of months before when I suddenly had lost quite some weight and felt slightly odd, but I put it down to my then regular use of amphetamines, vigorous exercise and plenty of partying. A later thorough discussion with the doctor about my anamnesis revealed that my liver had most probably been damaged in my teens when I had gone through several years of antibiotic treatment to manage a skin condition.
The search for treatment options started immediately. I was not only warned by several peers and colleagues that I should be treated immediately, as an EATG member and treatment activist I was also a regular enough participant of HCV and liver conferences and events to know that the sooner I have access to medication, the longer I could live and postpone irreversible liver damage. As I am also diagnosed with depression and had heard plenty of upsetting stories from friends and colleagues who had gone through interferon-based treatments, DAAs were clearly the only option for me.
The situation is quite complicated in Hungary. Once diagnosed with HCV, you are officially registered in the central registry for liver patients (called “HepReg”). HepReg is managed by hepatologists and the health insurance fund (there is a single, unified, state health insurance and social security conglomerate in Hungary). HepReg includes detailed data on the patients’ health with all and any relevant diagnoses and test results that affect your liver health. Your data in HepReg are available to you on the internet, and you can check your ranking on the treatment waiting list if you know the number of your application to the health insurance fund.
Patients are scored on the basis of their status: you get points for each condition or illness and on the basis of the state that your liver is in. Being HIV positive adds a lot of points, so does depression. More advanced fibrosis or steatosis add points to your score, too. Your score can go from 0 to any number. My experience from talks with doctors shows that about 50 points mean advanced liver disease, while 60 equal cirrhosis, over 60 decompensated cirrhosis. My current score is 48.5, which ranks me 357th on the waiting list. Mild liver enzyme elevations, and a viral load of 500,000, genotype 1 - This was my situation at the beginning of June 2016.
The final decision about ranking for treatment is taken by the Hepatitis Therapy Commission. This entity is composed of hepatologists, infectologists, liver researchers, and two patient representatives. The Hungarian Association of Liver Patients does not have a special chapter for HIV co-infected patients, and I have not established any official links with them so far. As usual in this region, patient organisations are chaired by prominent doctors rather than patients themselves. The Commission meets once monthly to review data in HepReg and to decide about treatment eligibility. Some people complain about a certain degree of corruption in this Commission as well, but I have not been able to confirm this in any way.
Theoretically, 60 patients can be treated per month with currently available DAA regimens. Most of the patients tend to be genotypes 1 or 2, so these regimens are Gilead’s Harvoni® and AbbVie’s Viekira Pak®, with MSD’s Zepatier® added recently to the list of available treatments. Although the final, actual price of these treatments is not public, we know that companies are paid something very close to the list price; payment is due per completed treatment rather than the duration (12 or 24 weeks all the same); companies also must cover related diagnostic costs; and that IFN based treatments are still the standard of care even though many try to avoid them. One company representative reported the same numbers, but also that orders were stopped regularly.
Not unknown other parts of the world, the constant lobbying activities of pharmaceutical companies compounded by persistent corruption on all levels in health care in Hungary make the entire system completely opaque, frustrating and even Kafkaesque.
So once again, theoretically I could have become eligible for treatment (most probably with Harvoni® or Viekira Pak®) within one year. But treatment eligibility now starts at 60 points in HepReg (used to be 50), and I am at 48.5. I should be a lot sicker to be treated - I was not really keen on that. Also, as there is a constant influx of new patients into the system, the ranking is really just a vague indication, as many of the patients are diagnosed late, thus land in the system with a higher score.
Another problem is that treatment availability is stopped regularly. “I don’t know what’s going on, but nobody has been put on treatment for months again”, said one senior HIV physician in June 2016. Another liver doctor said that IFN free treatment was available in severe cases only, and she also bemoaned the contradiction that these patients see an elevated risk of decompensation, side effects and worse outcomes than patients whose liver is in a better shape.
My search for treatment was not an easy one. First of all I wanted to make sure that I got to the bottom of what the system in Hungary offers. After all, I am good tax paying citizen, never missed to pay my health insurance and have been working diligently as a treatment activist for many years. But I hit a wall very soon. The physician responsible for treating HIV and HCV co-infected patients did not examine me at all, only sent a message through one of the nurses that I should not worry, I had time to wait for treatment, many people were much sicker than me, and that it would take years for me to get treated. My regular HIV doctor is retired and no longer has the license to prescribe such an expensive regimen as DAAs are in Hungary. Fellow patients and peers, even physicians from the USA and Europe kept telling me that I should get treated immediately. The entire situation made me anxious to the point when I simply stopped going to or reporting from liver related meetings as I could not bear the pressure.
I stopped drinking alcohol entirely, stopped taking drugs, lost some weight and upped my exercise regimen to keep my metabolism in check. Sugar and fat were reduced, and I consulted my physician about other ways to ease the burden on my liver. I have been drinking plenty of thin coffee and water, and have tried to reduce the amount of anti-anxietic drugs I take. In the meantime, I was also looking for alternative solutions such as buyers’ clubs or perhaps a trip to India to obtain generic medicines. I was so desperate that I sought permission from the EATG executive director to talk to leading representatives of pharmaceutical companies to help me. Alas, I did not receive any help from them beyond sympathetic words and warm hugs. I suppose they also work on the basis of rigorous legal rules on conflicts of interest, and internal company interests are certainly a priority over one patient’s health. My plea to several peers and EATG members to help me get access in another country were unsuccessful as well - but then access at the current prices is extremely difficult, or even impossible, in practically all European countries.
Finally I changed from the official HIV+HCV doctor (who would not talk to me anyway) to a liver doctor in a major addiction clinic in Budapest. She has been completely open-minded and curious to understand how alternative ways would work in getting access. Finally, my blood-work and numbers were done, an ultrasound examination confirmed that I had no liver cancer or severe damage. So I could write to a renown German doctor for a therapy recommendation and help to access generic medicines from India or elsewhere. He connected me with Giten Khwairakpam. Giten was extremely helpful and offered Safino L®, the generic version of Harvoni® at a price of 1050 USD including delivery by international courier.
I obtained a prescription from my new liver doctor for the generic names of the compounds sofosbuvir and ledipasvir. I transferred the money, scanned and sent to Giten my personal data and the prescription. The pack was here in four days. One final surprise was that although no customs duty is payable after medicines for personal use in Hungary, the 27% VAT is charged on every item imported. So the final bill also includes another 307 USD paid to the state.
The hole in legal regulations is slightly tricky. Travelling to India and buying the medicines there, and then importing them into Hungary for personal use is not an issue at all - anyone can do it. This is the reason why one liver doctor in Hungary is already teaming up with a travel agency to bring patients to India so that they can buy their pills there. However, sending the same amount of the same pills by courier seems to be more problematic.
I took my first pill today. I will describe my final experience with the treatment later, and I am happy to answer all your questions. Giten also agreed to help others who are in need. He and his organisation have already helped many patients in East-Europe, especially Ukraine. But this experience seems to be relevant in Central Europe, too, and I hope that some can learn and benefit from my experience so far.