NAM AIDS Map – April 26, 2017

26 April 2017

HIV-positive mothers going hungry in order to pay for formula milk

Many HIV-positive nursing mothers in London are struggling to meet the financial costs of formula milk, according to a recent study.

Current UK guidelines recommend that HIV-positive nursing mothers should exclusively formula feed, as breastfeeding is a possible route of mother-to-child HIV transmission (although the risk is low for women taking treatment with an undetectable viral load).

But while medical interventions to prevent mother-to-child transmission (such as antiretroviral drugs) are provided free of charge by the NHS, it does not generally provide formula milk to women living with HIV. There are local schemes provided by some NHS trusts and local authorities, but they are not available in all areas or to all mothers.

Many of the women the researchers interviewed had very few financial resources. Purchasing formula milk was often a severe financial strain – most spent over £10 a week on formula milk.

One woman told interviewers:

“We bought less food to make sure we could afford milk. I will be happy when my baby is [weaned] so there is less financial strain. Formula feeding is very expensive, I found it a struggle to afford. I felt sad not being able to breastfeed especially as culturally I am expected to.”

Over half said that they or their family went hungry so they could afford formula milk. Half reported feeling unsupported and two women told investigators they had resorted to breastfeeding because they did not have enough money to afford formula.

Another woman said:

“My benefits were cut at the time. I found it really difficult to afford formula milk. I would rather walk the streets asking for change than resort to breastfeeding, which I did have to do sometimes. I went to my hospital crying because I was really struggling to afford formula milk.”

The National AIDS Trust (NAT) says that formula milk should be provided to mothers living with HIV to cover the first year of an infant’s life. They point out that this would be a low-cost intervention (less than £500) compared to the lifetime treatment cost for an infant should they contract HIV. It might need to be provided to 1300 mothers a year – the total cost would probably still be less than the lifetime HIV treatment cost for one child.

For more information on infant feeding, read NAM’s booklet ‘HIV & women’.

Switching to generic HIV drugs cuts costs without compromising effectiveness

The financial pressures faced by HIV clinics in the NHS was a major theme of the recent British HIV Association conference. Doctors discussed how they can keep costs down without compromising the quality of care. One of the most important ways they can do so is to switch some patients from branded, expensive drugs to generic, lower-cost alternatives. Many HIV drugs which only used to be available as branded, patented drugs are now available as generic medicines.

After a drug’s patent expires, other companies can produce their own version of the same drug, called generic drugs. They contain the same active ingredient as the branded products and have the same safety and quality requirements as the original product. They are much cheaper.

Pharmacists and clinicians in Brighton described how they encouraged people taking Atripla to switch to alternative regimens containing generic medicines. Atripla combines efavirenz, emtricitabine and tenofovir in a single pill taken once daily. Two alternative regimens were proposed:

  • Generic efavirenz, generic lamivudine (a very similar drug to emtricitabine) and branded tenofovir. (Three pills, once daily.)
  • Generic efavirenz, branded emtricitabine and branded tenofovir. (Two pills, once daily.)

Of 428 people taking Atripla, 268 were referred to a pharmacist to discuss making a switch. Of these, just under half (119 people) agreed to switch, most often to the first alternative regimen. This resulted in an annual cost saving of £159,000.

All the study participants who switched maintained an undetectable viral load. Only one person discontinued their new regimen because of pill burden.

Wanting to remain on a single-pill regimen was the main reason why people declined to switch. Many people felt it was more discreet.

However, switching to generics was not without its challenges. High levels of demand for generics from clinics across the country led to supply shortages and delays. As a result, patients sometimes received different brands of medication, with pills of differing appearance. This could cause confusion about which pills needed to be taken.

For more information on generic medicines, read NAM’s booklet ‘Taking your HIV treatment’.

Getting access to hepatitis C treatment

Access to hepatitis C treatment varies considerably across Europe, with England being one of the countries with tight restrictions on who can receive modern hepatitis C drugs, a new analysis shows. As a result, increasing numbers of people are being forced to import their own generic versions of the drugs – a strategy that is proving to provide effective treatment.

Researchers looked at national policies to check which patients were eligible to receive treatment with direct-acting antiviral combinations recommended in European hepatitis C treatment guidelines.

Numerous countries only provided treatment to people who already had significant liver damage (F3 fibrosis or F4 cirrhosis) – Slovakia, Croatia, Italy, the Czech Republic, Greece, Latvia and Romania.

England, Scotland, Wales and Northern Ireland each have their own decision-making process for health spending. In Scotland, everyone with F2 fibrosis or above can get treatment.

England and Northern Ireland have different restrictions for different genotypes of hepatitis C. Treatment is available for everyone with genotypes 1 or 4. But modern drugs are not available for people with genotypes 2 or 3 who have F3 fibrosis or less, except in cases where people cannot tolerate interferon injections. Moreover, only one drug combination is currently reimbursed.

No country refuses treatment because people have HIV and hepatitis C co-infection. But many central European countries don’t provide treatment to people who continue to drink alcohol or use drugs.

Faced with restrictive health service policies, individuals around the world have turned to the FixHepC buyer’s club in order to purchase their own hepatitis C medications. Whereas the NHS is legally obliged to purchase the branded, patent-protected versions of the medications which may cost £35,000 for a 12-week course, FixHepC helps people import generic versions of the medications, which cost far less – around £1000 a course.

They are manufactured by reputable companies in India, primarily for sale in Asian and African countries where the patents do not apply. It is legal for individuals to import small quantities of these generic medications into the UK and other countries, for their personal use only. Treatment still needs to be managed and monitored by a doctor specialised in hepatitis.

A conference heard results from 448 people who taken treatment in this way. Most were living in Australia, New Zealand, the United States and European countries, but there was also a large cluster of patients in Nigeria. Four-in-ten had previously tried treatment (generally with the older, interferon-based treatments) and three-in-ten had cirrhosis.

The sustained virologic response rate four weeks after treatment (SVR4) was 94% and twelve weeks after (SVR12) was 90%. This is similar to the results in clinical trials, using branded medications. Results were good for all genotypes, except for some treatment failures in people with genotype 3.

If you are thinking of getting your hepatitis C treated in this way, it’s very important to identify a reputable supplier for the medication and to be monitored by a doctor specialised in hepatitis. For more details, visit

Editors’ picks from other sources

Complexity of health system is ‘holding back progress’ in HIV care

from The King’s Fund

While HIV care in England is among the best in the world, the Health and Social Care Act 2012 has created a complex and fragmented system for HIV care. Responsibility for delivering services is spread between NHS England, local NHS organisations and councils, which has made it harder for areas to make co-ordinated changes across HIV services.

Open letter to Gilead Sciences about PrEP by EATG and the PrEP in Europe Initiative

from EATG / PrEP in Europe

Please read and share this letter signed by the European AIDS Treatment Group and the PrEP in Europe Initiative (PEI), a partnership of European prevention and policy NGOs. It requests Gilead Sciences to surrender their patent of Truvada or otherwise make it possible for Truvada or generic equivalents of it to be offered at greatly reduced prices to all European health care systems so that it can be used as HIV pre-exposure prophylaxis (PrEP).

The real sex lives of gay men – GMFA’s biggest survey

from GMFA

GMFA has just conducted its biggest-ever sex survey for the 150th edition of its resource FS. Ian Howley, Chief Executive of GMFA, said: “With over 3,000 responses it gives a fascinating snapshot of the kind of sex that gay and bisexual men in the UK are having, what they enjoy and what they are doing, or not doing, to maintain their sexual health.”

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