The report was written by the World Heart Federation on behalf of RHD Action. It provides a ‘snapshot’ of the people, policies and programmes that are working to prevent and control RHD around the world today. It features interviews with the people at the heart of the RHD community: both those living with RHD and the health workers who care for them.
There is a section on this issues in South Africa written by Dr Liesl Zühlke, Paediatric Cardiologist, Red Cross Children’s Hospital and Groote Schuur Hospital and University of Cape Town; Co-Director, RhEACH
You can read the report in full here.
Extract from the South African Section of the Global Status Report
The Awareness, Surveillance, Advocacy and Prevention (ASAP) programme continues apace in South Africa, with each of the four pillars served by a programmatic area. The programme’s strong record of surveillance projects continues with INVICTUS, which is the most ambitious RHD registry project launched to date. South Africa is also moving ahead in terms of research through the RHDGen project, which is studying the genetic makeup of people living with RHD, in order to identify people at high risk of developing RHD so that they may be prioritised for preventive treatment.
Advocacy for people living with RHD is another priority for the future. The South African programme has a good track record of including and empowering these communities: for example, the findings of the REMEDY study and RHDGen are being communicated to participants living with RHD before being released to the wider scientific community.
Patient advocacy will be a central theme during 2016’s annual congress of the South African Heart Association in Cape Town. A consortium of RHD organizations, including RHD Action, will invite 150 people living with RHD to join the congress for a morning of mobilization and advocacy, providing a venue for people living with RHD to better understand and manage their disease, network with their peers, and strengthen their relationships with the RHD research community.
Three-quarters of people on antiretroviral treatment at a clinic in Khayelitsha were also being treated for hypertension. Yet there is not enough information about how HIV and common NCDs such as hypertension and diabetes interact, or how medicines to treat them interact.
This is according to Dr Tolu Oni from the University of Cape Town, who is investigating the “collision” between HIV and NCDs.
“As people living with HIV are living longer, we are facing a new challenge. NCDs pose a new threat to people with HIV but there are many unanswered questions,” Oni told the international AIDS conference.
These questions include the extent of NCD co-infection, medicine interactions and how to co-diagnose and co-treat these.
Fattest nation
Aside from having the largest HIV population in the world, South Africa is the fattest nation on the continent.
Up to 70% of South African women and a third of men are overweight or obese, while a quarter of girls and one in five boys between the ages of 2 and 14 years are overweight or obese. Obesity is associated with type 2 diabetes, heart disease, stroke, hypertension, joint pain and certain cancers.
“Some NCDS are related to HIV infection itself and to the side effects of some of the medicines used to treat HIV infection,” according to UNAIDS. “Several of the opportunistic illnesses associated with HIV infection are NCDs in their own right, such as HIV-associated lymphoma and cervical cancer.”
Australian Professor Andrew Grulich reported that “the pattern of cancer and HIV is beginning to collide” as the population of people with HIV ages.
“There is an exponential increase in cancer as a person ages,” said Grulich.
A skin cancer called Kaposi’s Sarcoma was common in people with low immunity, but could be treated once a person was on ARVs. However, lymphoma was the most common cancer in people with HIV with mildly suppressed immunity, he said.
Californian epidemiologist Dr Melissa Frasco reported that two classes of ARVs were associated with an increase in diabetes, while “untreated HIV could lead to metabolic syndrome” (including obesity), which put patients at risk of heart attacks and strokes.
Supporting this, a Kenyan study has shown that HIV positive people who were not on treatment had significantly higher rates of hypertension than HIV negative people.
“Ageing with HIV is a huge issue in Europe, where people started ARV treatment earlier. Addressing this needs both a medical and psycho-social approach,” said Tamas Bereczky, who is both living with HIV and a researcher with the European AIDS Treatment Group. – Health-e News.
WEDNESDAY 19th JULY 2016, DURBAN: Women from across the world today stormed the corporate stall of multinational pharmaceutical company Roche at the AIDS 2016 conference in Durban. The activists demanded Roche urgently drop the price of a vital breast cancer treatment. The women showered the company’s stand with over a thousand bras gathered from women around the world and held a banner telling Roche to “Stop booby trapping access to medicines”.
In South Africa Roche charges R485 000 (US$ 34,000) per treatment course for trastuzumab, a very effective linchpin treatment for HER2+ breast cancer. This prices it out of reach for the women who desperately need access today. For over eight years the Treatment Action Campaign (TAC) have been fighting for access to affordable HIV and TB treatment, and more recently have turned to ensuring access to medicines across all disease areas.
Tobeka Daki HER+ treatment activis
Tobeka Daki, a HER2+ breast cancer patient from the Eastern Cape, South Africa, has been living with breast cancer and urgently needs access. “My medical aid declined to cover trastuzumab, claiming that it was too expensive. There’s no way I could pay myself. Without access to trastuzumab, my cancer has spread and, last year, I was diagnosed with bone cancer of the spine. Trastuzamab is a last hope for patients like me.”
Nkhensani Mavasa, TAC National Chairperson said: “We are here today because Roche hoardes a medication that could save lives. Their greed is killing women the world over. Women with HER2+ breast cancer require trastuzumab. A 12-month course of trastuzumab costs nearly half a million rand in South Africa. It is unaffordable to women across the world.”
“This must change, and it is Roche’s power to do that. But they choose to maintain their profits rather than save the lives of women. They are booby trapping access to lifesaving medicines and it must stop. We call on Roche to drop the price of trastuzumab immediately and if they don’t governments must move fast to secure generic supply,” said Lorena Di Giano from RedLAM in Argentina.
Kalyani Menon-Sen of the Campaign for Affordable Trastuzumab in India said: “In India we have had doctors tell us they see no sense in telling their patients that there is a medicine that could treat their breast cancer and save them when they could not afford to get it. Greed is the sole motivator for the rapacious pricing policies of Roche and other big pharma players who control the production and distribution of the new generation of cancer drugs. The time has come for us to take a clear and unambiguous stand. Patents and other monopolies on life-saving drugs like trastuzumab are morally and ethically indefensible. Human rights are more important than trade rights.”
As the women sang songs demanding health justice and draped their bras symbolically over the expensive PR merchandise, Roche execs disappeared from sight. As women sang songs demanding health justice, Portia Serote, the National Woman’s Representative of TAC said: “It is a moral outrage for Roche to watch women die knowing it could easily save them”.
The women were joined by activists from around the world, including the UK, India, Argentina, and Brazil, where Roche also chooses to price their cancer medicines so high women die without accessing treatment.
A Community Conversation with People Living with HIV and Non-‐communicable Diseases (NCDs)
AIDS 2016, Durban, South Africa Wednesday 20th July
13:00-‐15:00
Global Village, the People Living with HIV Networking Zone, nr 607
Non-‐communicable diseases (NCDs -‐ mainly cancer, cardiovascular disease, chronic respiratory diseases, and diabetes) are the most common cause of death and disability worldwide, accounting for 68% of global mortality, or two out of every three deaths. Driven largely by four main modifiable risk factors – tobacco use, unhealthy diet, physical inactivity, and harmful use of alcohol – NCDs are a major cause of poverty and a barrier to economic and social development.
People living with HIV often also have high rates of NCDs. Some NCDs are related to HIV infection itself and to the side effects of some of the medicines used to treat HIV infection. With advances in care and treatment, people living with HIV are living longer and ageing, and developing non-‐HIV-‐related NCDs similar to the rest of the population.
The response to HIV and NCDs shares common features, including having strong health services, the need for individual and community empowerment, leadership and engagement.
An effective NCD prevention and control response must be guided by the views of people living with NCDs. This community conversation organised by the NCD Alliance, GNP+ and the South African NCD Alliance s aimed at exploring how people living with HIV are affected by NCDs, what are some of the key issues faced and recommendations on addressing these. It will also explore lessons learned from the HIV movement for the participation and empowerment of people living with NCDs.
| 13:00 -‐ Welcome |
Johanna Ralston, Vice chair NCD Alliance, CEO, World Heart Federation
Jessica Daly, Medtronic Philanthropy |
| 13:20 -‐ Introduction to the project |
Katie Dain, Executive Director, NCD Alliance |
| 13:30 Facilitated Discussion
How have you been affected by NCDs? What are the main challenges faced and |
Katie Dain, Executive Director, NCD Alliance
Dr Vicki Pinkney Atkinson, South Africa NCD Alliance |
| what are some key recommendations towards NGOs, government, society to ensure high quality equitable NCD prevention and care for all? |
|
| 14:15 Facilitated Discussion
What is effective patient participation/involvement/empowerment?
What are some ways you have been successfully empowered ?
How would you like to be engaged with regards to NCDs? What would you need to do so?
Do you see opportunities in people living with HIV working with others living with NCDs – working towards common issues?
14:55 Wrap up |
Katie Dain, Executive Director, NCD Alliance
Dr Vicki Pinkney Atkinson, South Africa NCD Alliance |
A Community Conversation with People Living with HIV and Non-‐communicable Diseases (NCDs)
AIDS 2016, Durban, South Africa Wednesday 20th July
13:00-‐15:00
Global Village, the People Living with HIV Networking Zone, nr 607
Non-‐communicable diseases (NCDs -‐ mainly cancer, cardiovascular disease, chronic respiratory diseases, and diabetes) are the most common cause of death and disability worldwide, accounting for 68% of global mortality, or two out of every three deaths. Driven largely by four main modifiable risk factors – tobacco use, unhealthy diet, physical inactivity, and harmful use of alcohol – NCDs are a major cause of poverty and a barrier to economic and social development.
People living with HIV often also have high rates of NCDs. Some NCDs are related to HIV infection itself and to the side effects of some of the medicines used to treat HIV infection. With advances in care and treatment, people living with HIV are living longer and ageing, and developing non-‐HIV-‐related NCDs similar to the rest of the population.
The response to HIV and NCDs shares common features, including having strong health services, the need for individual and community empowerment, leadership and engagement.
An effective NCD prevention and control response must be guided by the views of people living with NCDs. This community conversation organised by the NCD Alliance, GNP+ and the South African NCD Alliance s aimed at exploring how people living with HIV are affected by NCDs, what are some of the key issues faced and recommendations on addressing these. It will also explore lessons learned from the HIV movement for the participation and empowerment of people living with NCDs.
| 13:00 -‐ Welcome |
Johanna Ralston, Vice chair NCD Alliance, CEO, World Heart Federation
Jessica Daly, Medtronic Philanthropy |
| 13:20 -‐ Introduction to the project |
Katie Dain, Executive Director, NCD Alliance |
| 13:30 Facilitated Discussion
How have you been affected by NCDs? What are the main challenges faced and |
Katie Dain, Executive Director, NCD Alliance
Dr Vicki Pinkney Atkinson, South Africa NCD Alliance |
| what are some key recommendations towards NGOs, government, society to ensure high quality equitable NCD prevention and care for all? |
|
| 14:15 Facilitated Discussion
What is effective patient participation/involvement/empowerment?
What are some ways you have been successfully empowered ?
How would you like to be engaged with regards to NCDs? What would you need to do so?
Do you see opportunities in people living with HIV working with others living with NCDs – working towards common issues?
14:55 Wrap up |
Katie Dain, Executive Director, NCD Alliance
Dr Vicki Pinkney Atkinson, South Africa NCD Alliance |
