Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
It looks likely that in 2016 generic Hepatitis C medicines will reduce Gilead’s profits by a few billion dollars. In the scheme of things, for a company that makes tens of billions of dollars profit each year it is not a big thing but for greedy people and greedy, rapacious corporations, every dollar counts.
What is the fightback plan. What will Big Pharma do to stop generic manufacturers eroding the vast mountains of profit companies like Gilead make?
Well lets look at a couple of examples and start with New Zealand.
The rules for importing medicines into New Zealand for personal use, generic or non-generic, have been the same for many decades. A New Zealand citizen has been able to import just about any prescription medicines (except for narcotics and specifically prohibited drugs) just as long as they have a prescription from a New Zealand doctor.
There has never been any problem with this system for more than 70 years, it has worked well.
Now suddenly things have changed.
After nearly 12 months of helping New Zealand people access generic Hepatitis C treatment with no problems other than finding a supportive doctor who would write the prescription New Zealand Customs is suddenly seizing generic Hep C medicines and sending them to MedSafe, a New Zealand government agency like the US FDA.
I have received a number of emails about this, here is one:
Sorry about the delay in getting back with the prescription and fibro scan.
My specialist is willing to write a prescription for the solvadi ribovarin combination
sourced through the Australian company that you mentioned in our last email, and
I’ve just had a fibro scan, so hopefully we can get started soon!
Medsafe NZ has thrown a curve ball in that another form is now required from the
prescribing Doctor who must now accept full responsibility for any adverse effects attributed to these Hep C meds.
I’ve yet to hear from my specialist about this new requirement!
He was keen to get me to sign a disclaimer before hand but I would say that this new
requirement would override my disclaimer.
Now just suppose that I was unable to get a doctor to sign this form, which is a very big ask, i.e. putting their professional career into the hands of an unapproved drug company, what would be my options?
I’m quite willing to travel across the ditch to pick up medications, maybe see a doctor in Australia willing to write a script, and then bring the medications back!
Only as a last case scenario! Hopefully it wont come to that.
I should know by the end of the week if the specialist is willing to sign this new form,
thanks once again for your time in this matter.
So what is happening in New Zealand. Suddenly a system that has been working well for decades is being changed. It is no co-incidence that this is happening when generic Hep C treatments are starting to flow into New Zealand and New Zealand doctors are starting to become more willing to write prescriptions.
It is the influence of Big Pharma, it is the reach of Big Pharma, its connections with the people who run the government agencies that causes these changes. No need to change a law just make some changes to how it is administered, make it harder and more threatening for doctors to write prescriptions and you make it harder for patients to get the medicines.
There is no obvious corruption. Officials get taken to lunch at a very plush restaurant, get sent to conferences, small, expensive gifts, maybe the promise of a very nice job when they leave the public sector and go into the private sector.
The same thing happening right now in Romania. Romania has rules almost exactly the same as in New Zealand. For the past year I have been helping Romanian people get generic Hepatitis C medicines sent to Romania from India.
No problems, if they had the prescription then they got the medicines.
Now, suddenly, like in New Zealand, the Hep C meds are being seized by Customs and more paperwork is being demanded.
This is obviously a tactic being employed by Big Pharma to put the squeeze on countries where the rules are favorable for importing generic Hep C medication.
I would risk the prediction that the UK will be next.
The only way that this insidious and wicked behavior by Big Pharma can be combated is in the public arena, in the News Media and through other media forms.
Please use this link to see how New Zealand’s courageous news media is responding
11th June 2016
Britain’s NHS and Generic Hepatitis C Treatment Update.
Because I am in the UK at the moment and talking to doctors and patients and researchers here about generic Hep C treatment and the NHS I am very interested in noticing the process of change taking place in the UK as attitudes (very) slowly change here.
To a degree it is a similar process to what I saw take place in Australia, just slower because the British NHS is a vast and ponderously slow creature carrying a huge and cumbersome bureaucracy. The British bureaucracy is famous for its conservative stance on all issues and the British medical Establishment is equally infamous for its conservative views. So things are going to move slowly here.
However as the news media gives the issue of Hepatitis C and the associated costs and inequalities of treatment more coverage and the medical profession see more and more good results coming from generic treatment, then change will happen.
Then it becomes a win/win situation. People choosing to take generic Hep C treatment will get support through the NHS monitoring their treatment and the NHS will win because each person treating themselves with generic Hepatitis C medicines from India will save the NHS about 20,000 pounds.
Below is an email I received this morning from a person in England who decided to treat her Hep C with generics.
I thought you would be interested in my experiences in the UK. As I explained to you, my consultant was not prepared to support me if I obtained generic medications. So after following your expert guidance and support in obtaining Ledifos from Parag Jain in India, I started self-treatment and then visited my GP and asked for their support. I experienced a good example of a GP acting as an advocate for their patient as she explored all options to ensure I received the specialist care and support that she herself could not provide. She had obviously been in contact with the hospital as I then received a letter inviting me to attend the Hepatitis C clinic for blood tests and monitoring. Bloods were taken a week later than usual and I will not require such extensive monitoring that NHS England is demanding. My consultant is now recommending further blood tests at End of Treatment, 12 weeks. They will then review me in clinic in August to advise me of results and to discuss onward management.
Pre-Rx: HCV Viral Load 802,815 IU/mL ALT 202 IU/L
3 weeks: HCV Viral Load 19 IU/mL ALT 26 IU/L
5 weeks: HCV Viral Load undetectable ALT 31 IU/L
I am so relieved it is going well and will complete the 12 weeks course. Side effects are not too bad, stomach upset and headaches have passed. I did have some nausea and dizziness last week. I am now experiencing incredible thirst, despite drinking loads of water and energy levels are very variable.
The nurses at clinic explained that NHS England guidance would only provide me with 8 weeks even if I was eligible. It also appears that a postcode lottery is developing as NHS England have dictated the number of patients that can commence treatment each month in the 22 operational delivery network areas. My geographical area has been allocated the lowest number across the UK so even less likely that I would have obtained treatment for years!
So once again thank you for the valuable work you are doing providing honest and reliable information to enable individuals like myself who are not deemed “ill enough” to warrant treatment, to take action themselves.
I will keep you informed of my progress.
14th June 2016
Because I am talking with people with Hep C from all over the world every day I get a strange patchwork of a global perspective on the Hepatitis C situation. I say a patchwork perspective because whilst I talk with a lot of people about generic Hep C treatment options and related issues, I get a lot of enquiries from some countries and few or no enquiries from others.
This is an interesting thing and it has taken some time to understand why this is so. It is easy enough to understand for some countries, like for example Holland or Denmark it is because they have very good public health care systems and people with Hep C there will get their treatment for free without having to wait years until they have cirrhosis and permanent liver damage.
But there are other countries that I rarely hear from and this is because their authoritarian governments have such tight controls over the importation of generic medicines that people with Hep C there know they have very little chance of successfully importing medication for self treatment so they just don’t bother considering it.
Another factor in these same countries is that they also have highly authoritarian and controlling medical professionals. A medical ‘establishment’ where the doctors consider themselves the absolute authority on issues of health and treatment, where they resent and resist any outside voice or alternative opinion to that which they themselves are suggesting or offering. A common feature is also that these same medical ‘authorities’ walk hand in hand with Big Pharma and enjoy a share of the largess that Big Pharma dispenses amongst its followers.
These are countries like Hungary, Serbia, Austria, Germany and other Fascist states of Eastern Europe. These are nations where state control and medical authoritarianism over-ride their citizens’ right to good health, to making their own choices about their treatment options.
In these countries doctors are like the priests of the Dark Ages in the way they resent any alternative to what the status quo offers and will burn at the stake anyone who seeks or offers alternatives.
An example of this is a conversation I have been having with a person from the USA over the last couple of months. She has been helping a poor family friend, who lives in Hungary, try to get treatment for their Hep C.
After doing her research she suggested that her friend use the generic treatment option and contacted me for details and options.
However in the mean time her friend in Hungary had been speaking to his doctors and they had convinced him that generics were a total waste of time, that they were either fake or dangerous and then further convinced this man that his only hope was to purchase the Harvoni treatment for US$85,000.
Now this is a poor man living in a poor country on a very low income.
His only asset is his house which he was able to montage for US$35,000 but was still well short of what he needed for the treatment so he has asked his friend in the USA to help him with money.
This is the most recent email:
I just talked to #### again and he is still hoping that I will be able to send him $5,000 so he can start the medicine. I can only cry now when I talk to him because I have no money to send him and I also know that this would only give him one month of pills!! I tell him about you and how you can get generics. However, his doctors have convinced him that this generic medicine is no good. Even after many times I have told him that it is exactly the SAME as what he a paying a fortune for.
I begged him to have his brother #### email you at least to just ask questions. His brother can translate his Hungarian to English before he sends to you and I also told him he could CC to me so I can help with any understanding. I am praying that #####’s younger brother , will email you to ask questions. I believe if you can ease their mind about this way…… so that ##### may have a chance to live.
These are some questions he needs to know:
How do you know this medicine is the same??
How long would it take to get the medicine??
Where does he have to go to get the medicine??
Will he be able to get a doctor who can monitor his progress??
many thanks for your help
It is a sad situation where one of the most profitable businesses in the world (pharmaceuticals) uses its money to buy the favours of one of the wealthiest professions in the world (medicine) to the detriment of the world’s sick and suffering people.
16th June 2016
International Corruption and Big Pharma: Buy or Die in Taiwan.
It seems that June is the month for talking about the International Hepatitis C situation and how Big Pharma uses its money and influence to corrupt government and medical officials and institutions. This post is about Taiwan but let me just talk about how these things work before I get into the story.
It is difficult for the average person to comprehend the amount of money that Big Pharma has available to use in the process of corrupting people in government and medical professionals.
For example Gilead makes tens of billion of US dollars in profit every year. One billion dollars is one thousand million dollars. So IF a company like Gilead was to dedicate one billion dollars each year to buying influence, buying favors it would be able to give US$1,000,000 to the ten most influential people in the 100 wealthiest nations on Earth.
In other words it could choose the 1,000 most influential people in the world of medicine and health care and give them each $1,000,000 each year to bend rules and laws in the favor of Big Pharma and it would make no difference to the profit margins of the year.
And that is what happens… on a larger scale than this, not only with governments but with professors of medicine, with the heads of departments at medical universities and research hospitals.
It happens on a scale that you and I cannot comprehend.
In the case of Hepatitis C Big Pharma buys the leading Liver Specialist in all the major countries and the officials in the regulatory authorities. It buys them with grants, with gifts, with donations, with out and out bribes.
Big Pharma buys the favor of these influential people and we die, we die in the hundreds of thousands. Our friends die, our children die, our mothers and fathers die, all because of the corrupt practices of government officials, doctors and Big Pharma that keep life saving medicines out of our reach.
Buy or die indeed.
Below is an email I received today from a lady whose sister had Hepatitis C in Taiwan. She could not afford the US$90,000 for Harvoni so I assisted her sister with the generic option.
At first we arranged for the generic Harvoni to be sent from India by mail to Taiwan. This had been successful a number of times previously however my instructions on how the parcel should be tabled were misunderstood and this time the meds were seized by Taiwanese Customs, which caused us to try a number of ways of getting the meds released. It became a saga of greed and corruption, please read on:
I have been meaning to write you so that I can appropriately THANK YOU
for assisting me in securing the generic Harvoni for my sister who lives
in a country that is still using the Interferon and Ribavirin to treat
Hep C patients. I, however, have been waiting for the viral report which
just came out a few hours ago. My sister’s viral count was undetectable
four weeks after the start of the treatment!
My sister contracted the Hep C virus from a blood transfusion during a
surgery about 20 years ago. She had no symptoms and did not know that
she was infected until a blood test about six years ago. She was not
treated for the disease but was rushed to the ER last fall due to
bleeding of the esophageal varices. That was the first time we realized
that her liver disease is quite severe. I live in the US and had heard
of the Direct-Acting Antiviral (DAA) medicines for Hep C. I shared the
information with my sister but was both surprised and disappointed to
learn that my sister’s only treatment option was Interferon and
Ribavirin. She began the treatment the end of last year and suffered
immensely so much so that the treatment induced more symptoms of liver
disease. That was when I stumbled onto your blog and learned of the
generic medicine you had used to treat yourself. I reached out to you,
and you kindly shared with me the contact information of Parag in
Mumbai. The shipment of the generic medicine to Taiwan took place in
February, but it did not go well. The package was withheld by the FDA in
Taiwan which requires a written prescription by a local doctor. We were
led to believe that obtaining a prescription would be a simple task but
ended up spending two weeks unsuccessfully searching for a physician to
write one. We then found the website of an alumni association of a
well-known Medical School in Taiwan claiming that the Association could
assist in the treatment of Hep C including the service of obtaining the
prescription. We were elated but quickly realized that the person was
using his affiliation with the Medical School to run a business. He was
selling the generic medicine from India but was asking for a price that
is ten times more the actual cost. I shared with the person that all I
need is a prescription, and he eventually agreed to get a prescription
for my shipment but with an asking price of $6,000 US dollars for a
prescription! This type of extortion could only happen because the
government is allowing individuals with connections to doctors and
politicians to take advantage of desperate patients. The government’s
policy is such that encourages unethical folks to make huge profits with
the lives of very sick people. We learned later that the reason that not
a single doctor is willing to write the prescription is that the
government would strip their licenses to practice medicine if they write
the prescription for generic medicine. They could, however, write
prescriptions for the DAA drugs by Gilead. For most families, it is a
choice of watching their loved ones suffer and die, or they would have
to sell their houses or take out a loan to purchase the expensive
medicine from Gilead.
In our situation, due to the need of quickly getting the medicine to my
sister, we had no option but made a trip to India. My husband flew from
the US to Mumbai in early April and hand-delivered the medicine to my
sister. During the entire time of securing the medicine, Parag’s
services, professionalism, and hospitalities are, unequivocally, one of
the best! He responded to all messages in the most professional manner
answering all questions I had promptly. He made it possible for my
husband to feel comfortable to fly to Mumbai, purchased the medicine,
and then delivered it to my sister. I could not have thank both you and
Parag enough for your missions to save the lives of Hep C patients
throughout the world. As you stated in your blog, thousands and millions
of lives could have been saved with the genuine generic medicine only if
governments of more countries would allow private import of generic DAA
You are welcome to post my message on your blog if you think it would
bring hope to other Hep C patients who are struggling to get hold of the
I thank both you and Parag from the bottom of my heart.
26th June 2016
The Brave and the Cowardly: Celebrities with Hepatitis C
There was a post today in a Facebook Group that I am a member of, this post provided a link to a Wiki site that listed a fair number of “celebrities”... famous people, who are known to have or to have had Hep C.
Of those on list some are brave and noble people, like Pamela Anderson have “come out” and made it known that they have, or had, Hepatitis C thus supporting the broader Hep C community by creating public awareness of the disease. By creating a social conversation about Hep C and the issues around treatment costs and access.
With other celebrities on the list it was only known that they had Hep C after they died. Some even kept their infection with Hep C secret after their death, such is the absurd stigma associated with Hepatitis C.
For example when Lou Reed died in 2013 no one initially mentioned the fact that it was Hep C that killed him, it was a “liver disease” or liver cancer. Eventually the truth came out.
Sadly Lou Reed’s Hep C was too advanced to be treated with DAAs when they became available. The damage had been done and liver cancer was the result.
Yet until he died no-one knew that Lou had Hep C. For a man who was open about his drug use and other life style activities back in the day, it seems strange that he bothered to hide the fact that he had Hep C. Maybe it was his spin doctors or his record company?
Lou Reed had Hep C when the huge debate about access to affordable Hep C treatments was in full flight yet Lou remained silent. If he had spoken out it would have made a huge difference to public awareness about Hepatitis C.
How much better it would have been if he had ignored “the stigma” and spoken out. How many people might have benefited from such an act?
The same with David Bowie, his official websites and Wikipedia page simple state that he died of liver cancer but this quote from a newspaper piece on Bowie’s death puts it pretty straight
If Bowie died of liver cancer, then he hasn’t died of a common disease; he died of a rare one, even if it is overly represented in the rock’n’roll hall of deathly fame.
Those with an ear for rock trivia might recall that Lou Reed – whose ’70s collaborations with Bowie resulted in Reed’s epochal Transformer album, among other gems – was also a victim of liver cancer when he died in October 2013.
In both cases, their liver cancer will have almost certainly been caused by the Hepatitis C virus, which has been running rampant through drug-injecting communities since the late 1970s and early 1980s.
Lots of people are pretty cagey about how they contracted the disease, and some will have picked it up from blood transfusions before Australian authorities began screening for the virus in 1992.
Even so, there is no debate about the main method of transmission: injecting drug users sharing needles.
The reality is that if you hear of a celebrity who has died of a liver disease or liver cancer the chances are very, very high that they actually died of Hep C.
Of course that has changed now and the new celebrities of the 21st century are rolling in money, whether in Music or Film or the Art world, and can all afford to treat their Hep C with DAAs and so will never have to admit that they have had Hep C. Safe in their shroud of secrecy and pretense
And don’t think that it is only famous people from the entertainment and art worlds that have Hep C and stay silent. It is across all the upper levels of all societies where wealth and privilege and excess exists. Hep C exists in those social groups in larger proportions than the normal population because of the tendencies to excess.
For example in my own small state of Tasmania, which has a total population of 500,000, I know of two high profile politicians who definitely had Hep C. Both from privileged back grounds. One had failed the Interferon treatment and the other refused it. Both of these men got Hep C in their youth from “lifestyle choices” but now that they are important public figures they have tried to hide their past and so have managed to keep secret the fact that they had Hep C.
When I began my public campaign in Tasmania for access to generic Hepatitis C treatment neither of these politicians spoke out or offered any support… they were already cured through their influence and connections, which enabled them to get access to the early DAA trials. So their secret was safe and the rest of the people, the voters, could suffer and die for all these two politicians cared.
All they cared about was their careers and keeping their secrets when they could have done great good by coming forward and starting a public conversation in the media about Hepatitis C.
These two men are selfish cowards and typical of politicians across the world who put their own personal interests ahead of the people they are meant to be serving.
And I say the same to all the other famous people who now can use their wealth to get the cure which is denied to most other people. These famous people could speak out and bring about great changes but they stay silent. Cowards all.
In the mean time the stigma associated with Hep C remains, ordinary people who can not afford to buy the available treatments are afraid to admit to having Hep C and this means there is no social conversation about the issues that surround this disease such as access to treatment.
And every day thousands of people die because our celebrities who love to be associated with trendy charities stay silent, choose to lie about their past and themselves because Hep C is not a trendy cause.
Remember that famous politician Bill Clinton who smoked pot but claimed he did not inhale, he could have done much to add to the debate about decriminalization of marijuana but instead stayed silent in his falseness … lies slide easily off the tongues of celebrities when the truth may be harder but ultimately much more rewarding.
Nothing is hidden that will not be found out so why bother hiding things, pretending you have not got Hep C when you have?
We need some courageous celebrities, like Pamela Anderson, to stand up and admit that they have Hep C and to bring attention to the needs of the common people who can not access treatment simply because of the price.
7th July 2016
Home Sweet Home and other dreams.
Well I have been back home in Tasmania for two weeks now. The first week was pretty tricky. Jet lag, culture shock, weather shock, shock shock and shock.
When we left England it was on the longest day of the year, the 24th June, and when we landed back in Tasmania it was a couple of days after the shortest day of the year.
We went from High Summer to the dead of winter in 48 hours… of course our bodies and our minds were spinning out!
Back in our little village of Woodbridge we did not venture out for nearly a week except to see our closest friends. Mostly we slept or stared out the windows over the water to Bruny Island. But tonight we went down to the local pub for dinner and caught up with the broader community, had a few drinks and a lot of laughs and some really great food.
In the past two weeks I have had a lot of time for thought, for review, for thinking about what has been done and what needs to be done.
Now, in the quiet of Winter, the long cold nights sitting in front of the fire are a great place for contemplation, for considering what the next step might be and reflecting on what has been done in the last few months, what I have learned.
The trips to the UK and to Spain were both interesting and productive. I learned a lot more about how things are in Europe and the UK and met with some great people doing great work.
The big lie in places like the UK and France is that they are making the new Hep C treatments available to everyone.
This is totally untrue.
The access to treatment is traiged. That is to say people have to be very ill before the national health services in the UK or France will even consider them for treatment with the new Hep C drugs.
For example in France I met a young woman who has genotype 2 (the same as I had). She was only 32 and had a good career. It would appear that she picked up Hep C from a small tattoo on her ankle she got done a few years earlier.
Whilst she was feeling the typical symptoms of Hep C like fatigue and “brain fog” her liver had no scars and so because she did not ahve any sign of cirrhosis she was told that she could not access treatment until there was some obvious damage to her liver.
Fortunately at the time I had a supply of Sofosbuvir and Daclatavir with me and was able to get that to her.
She had blood tests at 2 weeks into treatment and the Hep C viral load had dropped from 2 million to undetected.
She did ahve cirrhosis and a swollen liver but the NHS would only give her Sofosbuvir + Interferon rather than the superior treatment of Sofosbuvir and Daclatasvir.
Not only is Sof+ Daclatasvir a better treatment it also does not have all the terrible side effects of Interferon.
A doctor once said to me that using Interferon to treat Hep C is like amputating an arm to treat grangrene … it works but there are much better ways.
Interferon is a treatment from the Dark Ages of Hep C treatment.
The reason that the NHS offered this lady Sof+ Interferon? Interferon is lots cheaper!
Now I had the generic Sofosbuvir and Daclatasvir and I offered it to this woman but when she told her NHS doctor (consultants they call them in the UK) that she was considering treatment with generic Sofosbuvir and Daclatasvir the doctor point blank told her that if she used generic treatment then she would rerfuse to monitor the treatment!!!!
So she chose to do the Interferon treatment and every time I have spoken to her she was feeling worse and worse and worse.
So I hope that the treatment is worth the suffering and it cures her and that it does not do more damage to her body than the virus would have done.
I visited Hep C advokate David Crowley and his wife in Cardiff and we talked about ways of getting generic Hep C medicines to people in the UK and Europe and also about the general situation for people with Hepatitis C in the UK.
How frustrating it was for people waiting for treatment from the NHS and the frustrations of “not being sick enough” to get onto treatment with the NHS and the refusal of British doctors to monitor patients who chose to bypass the NHS and get their own generic Hep C treatment from India.
I also met up with Dr Andrew Hill and some of his post graduate students from the Imperial Collage in London. I had met Dr Hill at the Barcelona EASL conference but things were a bit hectic there and I had not had much of a chance to get to know him.
Now that we were both in London and had plenty of time we met at his home in London and we were able to discuss access to generic medicines in greater depth and also make some plans for assisting his students who are studying the issues surrounding the treatment of Hepatitis C in the UK through the use of generics.
One of the other things that was great about being in the UK was that I was able to assist people in Europe get access to generic Hep C medicines in a more direct way.
When I was in Barcelona I organised for quite a few generic treatments to reach me there and people from Italy and other European countries were able to fly to Barcelona and pick up generic Harvoni and Sofosbuvir and Daclatasvir personally from me.
It was a real treat to be able to meet people face to face instead of just organising everything through email.
When I was in the UK I was also able to organise shipments of generics to the UK and then send them on to various countries in Europe which prohibit importation of generic meds from India. The trick was that sending the meds from the UK by mail meant that the mail was treated as internal, or local, mail because of the EU treaties. This meant that I was able to get generic Hepatitis medicines sent to the UK, where there are almost no restrictions, and then forward them on to people in various EU countries like France, Latvia, Serbia, Italy and so on countries that would have blocked shipments from India. We got meds to a lot of people that way!
So as well as trekking through the Peaks District, visiting ancient castles and seeing the Loch Ness monster I was also able to get a bit of work done on my visit to the UK.
9th July 2016
Some Good News From Latvia
I have to admit that a lot of my blog posts lately have been a bit negative. I get quite angry about the greed of Big Pharma, the corruption in government and the medical establishment, the pathetic cowardly nature of doctors in the UK and so on. So I tend to focus on these things that are a bit negative.
So it is nice to be able to share some good news for a change, and this is very good news!
I mentioned in my last post that I was sending generic Harvoni and Sofosbuvir and Daclatasvir to Latvia from the UK because Latvia was preventing its citizens from importing Hep C generics direct from India themselves. So I had been organising shipments via Australia when I was there and via the UK when I was there. The UK was best because of the EU rules, once I got the meds into the UK then there was no risk of Latvian Customs intercepting them if I sent the medicines from the UK.
The problem was that there was a limit to how many shipments I could do from the UK and there are at least 50,000 people in Latvia with hepatitis C.
Anyway while I was in the UK I received this email from a guy in Latvia who was desperate to access generic Hepatitis C treatment from India.
I came across your blog through a friend’s suggestion who works for Hep
C prevention at the WHO.
My sister and her daughter both have chronic Hep C. Yesterday I went
with her to the doctor which prescribes 12 weeks treatment regimen for
genotype 3 (HCV-3): daclatasvir + sofosbuvir.
Of course, such treatment is not funded by the Latvian healthcare system. And we
are looking to buy generics. I have pharmaceutical distributor contacts
in India, I had worked before with for other purposes, but we realised
that due to recent amendments in the government regulations, medicine
import from third countries to Latvia has been made virtually impossible
since this spring.
I noticed in your that you have helped some other persons from Latvia to obtain
the necessary medicine via neighboring country. Could you let me know if
this is still possible and how would that work (in particular for
daclatasvir and sofosbuvir).
So I wrote back explaining the options. Because I had a back log of orders from people in Europe I could not send anything from the UK and suggested this person consider taking his sister and niece to Lithuania where the rules were more favourable and where I could organise shipping the generic Sofosbuvir and Daclatasvir to.
I gave him the names of some contacts in Lithuania who I knew would help him, some weeks went by and then I received another email.
At about this time the Latvian news media picked up on an open letter written by a Latvian woman, a nurse, who had contracted Hep C during the course of her work. This woman’s story received a lot of attention and started a very heated public debate about the terrible injustice of a government preventing its citizens accessing affordable generic medicines.
The email below discusses what was happening in Latvia.
Thank you so much for organizing these generic Hepatitis medicines for me. I know how busy you are fighting this live/death fight for all people who suffers from Hep C. I’m reading your blog.
Lately there is also big attention in Latvia about all this drug deal. Yesterday in news portal was a story about woman who was working in laboratory in hospital for years diagnosing Hep C and now she became sick and tried to purchase generic Harvoni from India and of course Latvian customs seized her drugs and sent them back to India. In the news was a letter this woman wrote to the President of Latvia explaining how lot of people is betrayed by their own country. We pay taxes, we do care for our own health, but gov can’t afford to heal people and there is only 160 spots for treatment with new medicine in a year. So basically, if you are infected but you don’t have cirrhosis yet – you’r out until you will become really sick. Doesn’t matter how old are you. So there are lot of respond from people here about this problem because nobody really realize a real number of people here infected. In this letter to the president woman was shocked about if gov can’t provide treatment then how they dare to take away chance for those who have bought meds by themselves by their own money. This woman was literally crying in this letter that she have been loyal citizen worked in hospital, raised five children and now when she became sick this country doesnt care about her anymore.
It is a terrible thing
Even i’m not treated yet and still are sick … there is days i can’t get out of my head that i should try to do something here to help people with solution. I know that i don t have such a power here, but it … feels like it would be right if i could help somehow … spread the word or … i don’t know !
So I hope you’r doing fine and i am amazed with road you have took fighting the war against such enemy … god bless you!
The great news is that the combination of news media attention and a vigorous public debate caused the Latvian government to change its policy and rules on Latvian people importing generic Harvoni and Sofosbuvir and Daclatasvir from India. The next email explains the news situation.
I hope you are well.
I wanted to update that following public protests the new health
minister has just canceled the restrictions to import medicines from
non-EU countries for personal needs in Latvia. This is effective from
I was wondering if it is possible to order directly to Latvia the
necessary medicine from your distributors.
Your friend in Lithuania was really helpful but we would need to go to Lithuanian doctor,
get the examinations, local prescriptions and pay another visit to Lithuania
We have the necessary medical documentation (prescription and treatment
recommendation from the Latvian doctor at hand), so direct shipping
would be really great.
Let me know if that is possible
Thanks and regards,
So now the Latvian government has changed the rules because of public pressure and now people in Latvia can import generic harvoni and other generic Hep C drugs by following simple guidelines.
This change in government policy is the result of a combination of factors that we have seen in Australia and New Zealand and to a lesser extent in the USA and the UK.
If the news media makes stories about the issues surrounding access to Hepatitis C treatment and the gross unfairness and the suffering caused by the terrible greed of big drug companies like Gilead then the public will understand what needs to be done and put pressure of the government and the hospitals.
The role of government is to serve the best interests of the people.
The role of doctors is to give their patients access to the things that they need to fight sickness and find health.
In countries like the USA and Canada and the UK neither the governments or the doctors are forfilling these basic requirements of their existence, indeed they do the opposite and put the interests of their people behind the interests of Big Pharma.
Latvia is a great example of where good media coverage and people power can bring about big positive changes for health outcomes for people with Hepatitis C.
These same principles will bring about changes in any country if enough people get together and make it happen.
Do not accept the status quo just because doctors and governments say that things will stay as they are. Things can be changed. It takes time, energy and commitment but things can be changed and changed for the better.