Patients struggle to get new Hepatitis C treatment in Macau

A course of a 12-week treatment with Sofosbuvir in some European countries can cost MOP360,000

Learning that a silent killer has slowly taken control of your body is one shocking revelation. But Hepatitis C patients have recently received life-changing news: a new effective – yet costly – drug can cure most cases of Hepatitis C in 12 weeks with few side effects. However, patients are struggling to get the new treatment in Macau, although the Health Bureau (SSM) has assured sufferers that the new drug has been listed and will be administered in accordance with a medical assessment process.
A Macau resident, who wishes to remain anonymous, told the Times that she has been waiting for treatment with Sovaldi (Sofosbuvir) for over a year. Radio Macau in March reported a similar case of another patient who’s been waiting and hoping for a treatment while suffering from other illnesses at the same time.
According to the World Health Organization (WHO), treatment with Sofosbuvir, which was made available in 2013, is recommended in genotypes 1,2,3 and 4 HCV infection, given in a combination with other drugs. It is particularly recommended to those who cannot access other treatments in the market after developing cirrhosis, one of Hepatitis C’s most commonly related diseases.
Last year, having sought treatment for other health problems and after running multiple blood tests, the Macau resident was informed that she had a number of other diseases, including diabetes, cirrhosis, portal hypertension, esophageal varices and Hepatitis C.
Although acknowledging that the local public hospital doctors were very helpful in dealing with her case, she said that when it comes to portal hypertension and esophageal varices related risks, she was not given comprehensive information.
While spending some time back in her home country, she was forced to seek urgent medical treatment there, which involved several blood transfusion procedures.
Having later learned that the new Hepatitis C drug was already available in Macau, she returned to the city, where she has been living and working for the past 30 years, resorting once again to Macau’s public hospital.
“The only thing I want is to be treated (…) Doctors said the new drug was already here. So I decided to come back and seek treatment here. So when I booked an appointment I really thought I would be getting treated soon. However, I was told that I would have to wait due to bureaucracy. I am still waiting. Bureaucracy has been their only excuse,” the resident revealed.
The Times contacted the Health Bureau seeking comments on Sofosbuvir’s availability in Macau, its price, how many patients are or will be subjected to treatment with the new drug, and the criteria outlined to prescribe Sofosbuvir to Macau patients.
Despite confirming that the medication is available in the territory, SSM acknowledged that Sofosbuvir has not yet been used to treat any patient in Macau.
“The Conde de São Januário Hospital offers treatment for Hepatitis C in accordance with internationally recognized and effective course of treatments and drugs. The new drug against Hepatitis C – ‘Sofosbuvir’ – has already been listed in Macau and we’re planning its use in patients for whom the traditional course of treatment is inefficient or patients whose bodies cannot tolerate the usual drugs,” SSM said, adding that patients will be subject to “observations on the efficiency of this treatment.”
The bureau further stressed that, “the hospital will plan a course of treatment addressing each patient in accordance with their actual condition.”
Furthermore, it said that Sofosbuvir will be administered to sufferers in need of this particular drug, following an assessment by a medical team.
“So far the new drug has not been used to treat any patient [here],” it reiterated.
The Health Bureau did not reply to some of The Times’ questions, namely on how much the course of treatment will cost; and what criteria will be considered when deciding whether to prescribe Sofosbuvir or not.
A 12-week treatment course with Sofosbuvir in some European countries can cost up to EUR41,000 (MOP360,000).
The Macau resident told the Times that the former treatment does not apply to her, because she has developed cirrhosis. Moreover, the traditional course of treatment is believed to be far more invasive, as also acknowledged by the WHO and doctors worldwide.
“The former treatment involved taking pills and injections. It took longer for patients to be treated and the treatment was very invasive. The new drug is believed to be much less invasive,” the Macau resident told The Times.
Although SSM reiterated that the new drug has been listed in Macau, the patient interviewed by the Times was told that bureaucracy issues were actually hampering its immediate use.
“The problem here is bureaucracy, because there must be a public tender to produce and distribute this drug. [The new drug] is very costly. I fear that I could die from one of my liver-­related diseases but, in reality, it’s because I was not treated for Hepatitis C. And they will never admit it,” the resident said.
“There have to be exceptions to bureaucracy. Otherwise people die. They do not see this as something serious, because it does not have the same dimension of a flu that can be easily spread. But you know… bureaucracy kills too.”
The Macau resident added that she has always been treated well at the pubic hospital, and this is the first time she has had reason to raise criticism.
The Times attempted to interview an infectious disease specialist working for the public hospital, but the doctor was not authorized to share any insights on Hepatitis C.

Gilead patents challenged

A U.S. group is seeking to void patents in five countries for Gilead Sciences Inc’s expensive Hepatitis C drug Sovaldi (Sofosbuvir), in an attempt to provide nearly 60 million Hepatitis C patients with access to a cheaper generic version, Reuters reported last week. Strongly recommended by the World Health Organization (WHO), the new drug can cost up to USD84,000 for a single course of treatment in the United States, according to a New York Times report last week. The Initiative for Medicines, Access and Knowledge, a New York-based legal group, has filed challenges in Argentina, Brazil, China, Russia and Ukraine.

Hepatitis in Macau

Hepatitis C is an illness that must be reported to Macau health authorities. According to figures released by the Health Bureau, 100 Hepatitis C patients last year were followed by infectious disease specialists at the public hospital.
In a statement issued last March, the Health Bureau revealed that the number of acute Hepatitis C cases recorded a decrease over the past 12 years.
2002 saw the highest surge in the number of cases, with 135 people infected. The Health Bureau added that in 2013, three cases were confirmed. In 2011, 2012 and 2014, no cases were recorded.
The issue with Hepatitis C though is that many cases are believed to remain undiagnosed, as stated in a report published by The Guardian in February.
Dr Chloe Orkin, a British consultant and honorary reader in HIV medicine at Barts Health NHS Trust, told the Guardian that about half of the 200,000 people in the UK believed to have chronic hepatitis C are undiagnosed.
She recalled  one of the major problems being that the authorities do not know where these people are and in what populations.

Battling the silent killer

Hepatitis C has been dubbed the silent killer as “it can cause chronic liver disease that progresses insidiously, unnoticed for decades,” wrote Patrick Strudwick from the Guardian, in a report published this February.
According to a World Health Organization factsheet, Hepatitis C is a liver disease caused by the Hepatitis C virus, which can cause both acute and chronic hepatitis infection, ranging from a mild infection to a serious, lifelong disease.
A significant number of those infected chronically will develop liver cirrhosis or liver cancer. The WHO estimates that 130 to 150 million people worldwide have chronic hepatitis C infection.
Some patients and physicians have raised concerns over the misconception that Hepatitis C is mostly spread among people taking drugs and sharing needles.
The Macau resident interviewed by the Times recalled that Hepatitis C, unfortunately, can be spread via a different number of ways and further awareness about the illness is needed.
According to WHO, the most common modes of infection of this bloodborne virus are through unsafe injection practices, inadequate sterilization of medical equipment, and unscreened blood and blood products. There are also cases, although less common, in which the virus was transmitted sexually.
Hepatitis C is not spread through food or water, or by casual contact, such as kissing, hugging, or sharing food and drinks with an infected person. The virus, however, can survive outside the body for some days and for weeks within syringes.