Sunday, July 21, 2019

Conversations about Opiate-verskrikte physicians, Discovery and doctors of colour

Dr January, (Doctor that Discovery fucked over and refused to pay for my appointments and scripts and made me go to their "white" doctor they chose for me- came to my rescue last night. The class action against racism (they only did that to 500 doctors of colour) is ongoing. My "white" doctor who I have been seeing for 18 months did not even know that I did not suffer from High Blood Pressure after treating me for bronchitis - then my BP went through the roof. He blamed the opiates for the High Blood Pressure and on a home visit he found that my chest was better but that I did have a very High Blood Pressure. Every single time I see him he tells me that I should not be on pain killers and that he would be happy to arrange a detox at a mental facility for me. He just does not understand the quality of my life. He asked me if I was taking my blood pressure pills and I told him that I had never been on BP meds because the BP is normally low. After 18 months he did not even know that!!!! I had spoken to and seen him every single day for a week and at no time did he bother to prescribe adequate medication. The medication for BP he prescribed caused diarrhea and did nothing for my BP. One visit from Dr January on Saturday night who prescribed two medications and pethidine, today my BP today is normal. These opiate-verskrikte doctors who are afraid of one becoming addicted get on my -used to be tits. Who the fuck cares about addiction when the quality of one's life is so bad.  But doctors are happy to give me as much morphine as I like - I can't take morphine because it makes me hallucinate.   I am going to tell this new specialist who knows nothing about my condition exactly how I have managed to stay alive and if she is an opiate verskrikte physician, I will find someone who understands me - even if I have to leave Discovery, pay Dr January myself and get my medications from a state hospital. As it is, my premiums to Discovery are R5 500.00 per month and R3000.00 on medications they won't pay for.   That is one moer of a lot of money to pay for a non-service where Discovery will only pay for medications that already exist in state hospitals.   Definitely profit before people. 
My friend Ursula Candasamy said: 
  • Ursula Candasamy Yes lady Di... I have the same fckn problem... I never have high BP... But once I drank 1 tramadol capsule ... and it was too strong for me as I wanted to climb the walls.... My tongue was so thick, I could not talk... I tried to sleep but got heart parpatations.... So hubby took me to the doctor... He reckoned that there was nothing they could do and that my BP was high... I told him my BP has never ever been high, so why does he think it is high now.... He said well its high now, maybe cause of stress... Fck... I never stress.... He wanted to give me medication to bring BP down... I said no thank you.... R300 Later and he really could do 4kol for me... Next day I detoxed my body with green tea and cucumber water and I got better... These days when I go to hospital for my chemo, they keep on telling me, WOW, your blood is beautiful.... You know what.... I have so many different opinions to some of these doctors and I have just decided to follow my own intuition and feeling so much better.... I won't even tell them what the fuck I am doing to make me feel so damn healthy... They can go and screw themselves lol.... I laugh when they tell me... WOW Mrs Candasamy, you look great.... The medication must be working... If only they knew their medication went down my fckn toilet ðŸ˜‚😂😂😂

Friday, July 5, 2019

What I have in Common with Ken Saro-Wiwa

My life was busy, happy and I felt contentment most of the time when I was not mad at the system which was letting others down – or if I saw or heard something that was unjust – I could not help it, I had to do something about it.
Then suddenly, like a thief in the dark, illness grabbed hold of me and refused to let go.  My acute illness turned to chronic illness and then included the gut-wrenching words “life-threatening, and ‘prognosis’.
No longer could I jump into my car and hair around bends to get to the abused or violated person…no longer could I jump onto the phone and call my connections around the world…no longer could I physically go into a shebeen and physically pull a child away from five men who were attempting to rape her…no longer could I actually, do what I felt I was put on earth to do.
How could I still have my life with so much of it taken away – I grieved for over a year for that which I could no longer do.  And then I decided, just one morning when I woke up, that I would continue to do what I have always done, but I would do it via the internet.  I could still make a difference from my bed.   I realized that if I did not do what I was put here to do, I would be turning my back on myself, literally snapping my spine and rendering me paralysed in every sense of the word.
Ken Wiwa, the son of Ken Saro-Wiwa, a human rights activist who was executed in November 1995 in Nigeria, asks in his book "In the Shadow of a Saint", "What is it that compels a man to risk everything - his life, his family, the lives of people around him - to make a stand for human rights?"
I am trying to answer this question. It is not religion. It is a deep horror of injustice that drives me to do something about it.  It is also a feeling of being the only one to really see the pain and abuse, the feeling that not enough people are prepared to do something or to take action...this is what drives me to take more and more risks.  It is a feeling of not having enough time and of a job that is too large to complete. It is a feeling of living in the moment because tomorrow will be too late.  It is a feeling of every life is precious and if nothing is done about the other out there, then nothing will be done about those around me.  It is a feeling of "if I look out for those, then these of mine will be OK".  It is a deep resentment of the abuse of others.  It is a loathing of unkind and uncompassionate behaviour.  It is the contempt for those who sit by and do nothing, knowing that while they look on they are as much to blame as the abuser and the oppressor.  It is a feeling of frustration that pushes me to the limits of my endurance. It is an all-consuming love of the people, of those who need protection the most.
I was born with an aversion to injustice – it is in my DNA and I can do nothing about it.  It is who I am, sick or not.

Tuesday, June 25, 2019

Discovery Makes Final Decision on Payment for Life Saving Medication.


Good afternoon Ms. Lang,

A funding decision has been communicated by our Ex Gratia Team, as provided by the Ex Gratia Committee, which I have attached for ease of reference.

As per attached, funding has been declined from Ex Gratia. We are unable to dispute this funding decision as Ex Gratia is a discretionary process with no guarantee of funding and once reached, the decision remains final.


Thobile Mthembu
Escalated Relationship Manager
High Touch Team
Vitality status: SILVER


This means that I will spend one week a month in hospital for my life-saving medication infusion that I have an allergic reaction to...Which Discovery is happy to pay for as well as to pay for the extra medications etc to manage the infusion. And the more times one is exposed to the allergen, the bigger the allergy until it becomes unmanageable. The hospital costs exceed the cost of the medication that I am not allergic to.

None of this makes sense to me at all. This kind of wisdom I do not understand.

Monday, May 27, 2019

Immunoglobulin Shortages continue in South Africa despite Constant Advocacy

Position statement on managing immunoglobulin replacement therapy for primary immunodeficiency (PID) patients during stock shortage
By the Primary Immune Deficiency Working Group (PIDDSA) of the Allergy Society of South Africa (ALLSA)
Summary statement
Immunoglobulin replacement therapy is a life-saving treatment for patients suffering from antibody deficiency secondary to PID. Most these conditions are prescribed minimum benefits (ICD10 coding D80.1-84.9).
Stock shortage of registered immunoglobulin products occurs in South Africa, leaving PID patients vulnerable. Immunoglobulin therapy cannot be discontinued by PID patients during stock shortages.
We strongly call on:
i) Doctors, patients and patient support organisations to assist patients with the burdens of frequent, unanticipated product changes
ii) Medical Funders to be responsive to request for short-term use of alternative, usually more expensive products during stock-outs
iii) Suppliers of immunoglobulin to improve the supply chain process and limit stock shortages
Immunglobulin therapy cannot be discontinued when stock shortages occur
Replacement immunoglobulin therapy (IRT) is life-saving and cost-effective for patients with hypogammaglobulinemia or functional antibody deficiencies owing to primary genetic immunodeficiencies. Most patients require 0.4-0.6g/kg/month to provide protective antibody levels and prevent serious bacterial infections. PID patients are completely reliant on this expensive and logistically challenging therapy. Failure of regular replacement therapy will lead to a dangerous decline in protective antibodies within 1-3 months, given a half-life of approximately 21 days for IgG. A single serious bacterial infection can lead to death or serious morbidity, such as the neurological impairment that may result from bacterial meningitis. PID patients cannot discontinue life-saving IRT during stock shortages
The route of administration can be changed to ensure Immunoglobulin treatment continues
PID patients can receive IRT via either an intravenous or subcutaneous routes, with largely equal efficacy but distinct side-effect profiles, pharmacokinetics and administration challenges. Thus, it is reasonable in times of shortage to consider changing the route of administration to ensure that IRT treatment interruptions are limited. However, changing the route of administration may NOT be appropriate if the reason for an original change from the intravenous to subcutaneous route was serious side-effects. Patients with medical reasons for using the subcutaneous route of administration for IRT must be fully funded and supported to use an alternative available subcutaneous product as this is a PMB condition.
The additional expense of short-term product change must be paid by medical funders when change is forced by stock shortage in PMB conditions
Product change for PID patients during times of stock shortage in many instances may mean using a more expensive alternative therapy to avoid treatment interruption. It is mandatory that medical funders support the additional expense of short-term product change. It is unacceptable that patients be expected to provide large co-payments to support the use of more expensive alternative products.
Patients should call on treating physicians, patient organisations and medical funders to help ensure treatment interruptions are avoided
Stock shortages and the resultant need for product change is a challenging situation for patients and their treating clinicians. We need to act fast to ensure that antibody levels do not drop dangerously low. We would encourage individual patients to contact treating physicians and vice versa to notify them of available stock and make an immediate plan. Treating clinicians then need to liaise with the patient and funder to ensure continuity of IRT. Patients can also reach out to their patient organisation PINSA to assist them in ensuring continued therapy through direct support and more widespread advocacy.
Available products need to be increased and existing supply chains strengthened
Immunoglobulin therapy is derived from donor plasma through a process of fractionation. It is complex to manufacture and make safe for patient administration; it is expensive and dependent on donor availability. SA has only one fractionator, that provides an intravenous and intramuscular immunoglobulin product. There are two other registered, imported products. Several patients access imported products via section 21 MCC approvals. This is a very limited number of products and suppliers by international standards. The consequence of this is inevitable stock shortages, which is a catastrophe for vulnerable patients’ dependent on these products. All suppliers in SA have experienced stock shortages at some time point. Thus, we call on our local manufacturers to make renewed efforts to ensure that the current problem is resolved and that future problems are avoided. We also call on government to facilitate the registration of new products in the SA market to allow for the unavoidable fluctuations in plasma donation. The current situation is untenable and may cost lives.
Compiled by:
Prof Jonny Peter
Prof Monika Esser
Prof André van Niekerk
Members of PIDDSA. Adopted by the Executive Members of ALLSA during an executive meeting on 13 May 2017.

Wednesday, April 17, 2019

Don't Deny Me The Right to Life

I have hypogammaglobulinemia and I need to have one treatment of intravenous immunoglobulins (IVIG) once a month to stop me from getting fungus, viruses, bacteria, hospital superbugs and every other germ.  Without this medication, I am constantly going from one infection to another, without many days between. And each infection further damages the organs until death is the result, or death results from one of the infections.   In the last four months I have had septicaemia twice and bronchio-pneumonia once, and numerous ear and throat infections which has led to three long hospitalisations in isolation.
My medical Aid is Discovery Classic Comprehensive.  Since 2015 Discovery has been paying for my IVIG treatments.  The first IVIG was being produced by the Western Province Blood Transfusion Service (a charity) and was called Stabilized Human Serum.  And in their infinite intelligence, the Medical Control Council closed their laboratory because it was not up to standard, but put nothing it it’s place, bearing in mind that the WPBTS is a charity, they did not have money to build a new laboratory.
The Medical Control Council registered two different IVIG; Polygam and Octagam.  After a lot of red tape and medical review team efforts including registering a dispute, Discovery paid for Octagam for me for the next three years.  
Octagam was being imported by Octapharma and ran out of stock in the country half way through 2018.  We chased up every bottle from every hospital in the country and managed another two treatments.  We then motivated for me to use Polygam, although I had had an allergic reaction to it once before during a hospital visit.  They agreed and we started on Polygam for a few months – each time the allergic reaction got worse until my physician stopped the Polygam infusion because he said that the next time it would end up with me in ICU and intubated, if he could save my life.  He said that continuing with Polygam would be a catastrophe.
Discovery has a Rare Disease Department and they suggested that I get the Octagam via a Section 21 company (we applied to Equity) to import it.   This necessitated a lot of red tape, many forms and a payment to the Medical Control Council of R300 for approval.  All the documents were then sent to Pre-authorisation and escalated to the Medical Review Teach and Touch Health for approval for payment.
I have received notice that Discovery will pay up to R15 000 per treatment and I am to use Southern Rx to obtain it.  They are now telling me which company to import it from.   I have also received notification from Southern Rx that my share of the payment will be R166 207.20 per month for my dosage.
I don’t know anyone who has that kind of money to pay for medication that is life-saving and life-enhancing ie. that is needed to stay alive.
Our Constitution specifies that we have the right to life, and Discovery and the Medical Control Council is denying me the right to life.

Friday, March 22, 2019

Midnight Freight Train of Pain

It is again 2am and I am alone (Patrick sleeping) in this world of blinding pain. I am recuperating from pneumonia and then get an acute colon infection which is making that pain train rush in on me faster than I can cope with. This has been one of the longest 24 hours of my life ... going from moment to moment, minute to minute and then making it one hour at a time. This is what will happen now without the IVIG (Octagam) - I will go from one infection to another until one actually kills me. But the fight for Octogam can only continue next week when the physician has to complete lots of forms for approval from government for us to import the medication ... once we have that authority, we have to have a clinical evaluation of why I can't have Polygam, a motivational letter for the Octagam and a new script sent to Discovery. They will then decide if they are going to pay or not. It is going to be a tough one, but one step in front of the other.
When I am in an acute infection stage, I need my pain meds more often and I know my body and how much is too much - and what can be used in safe dosages. Here comes the problem - Patrick does not understand that and has a go at me every single time I bring the pain meds closer together .... always because he is afraid I will become addicted. So what?? I am dependent on it and I am not on pain meds for recreation use - why can't I have more pain free hours so that my life has a little more quality. I am left here in extreme pain because of his attitude and what he said to me this evening. I have taken a less powerful pain shot to satisfy him when in fact, I should have just said - fuck you and taken the pain meds that I have for just such an event as what I am experiencing right now. He does not understand that I am chronically ill but that I get acute infections which needs more medication and pain relief. I am spending a lot of time on the loo - just shitting blood. Please God, help me get through the night.

Tuesday, March 19, 2019

South African Government denies Right to Life

In their infinite wisdom, the Medical Control Council shut the Western Province Blood Transfusion laboratory that was making Stabilized Human Serum to treat Hypogammaglobulinemia, amongst other things.  The Western Province Blood Transfusion Services is a charity and did not have the money to equip a new laboratory so it was closed.
The only treatment available to South Africans is Polygam and Octagam, these being the only two products registered by the government.   Because of the horrendous side effects of this intravenous immunoglobulin (IVIG) I asked the Professor in Cape Town how long I would live if I did not have IVIG.  He said, “Three months”.   
Hypogammaglobulinemia is a rare disease diagnosed once in every 10 million people in which the immune system does not produce any antibodies and therefore the patient is susceptible to every germ, virus, fungus, allergens and bacteria around.  Every infection causes more organ damage and the more organ damage, the faster the organs stop working.  Most of us have huge problems with our lungs.  I am on 24 hour oxygen.  However, there are other conditions such as CVID that also requires monthly infusions so that those patients can stay alive.  IVIG also saves the lives of burn victims.
Discovery was paying for my Octagam after I went to their medical review board because I was allergic to Polygam.  This year they sent a letter stating that I would have to pay the difference between the Polygam and the Octagam, although at the dosages required, there is little difference in price.
I tried Polygam and with each successive infusion, my allergic reaction became worse until the physician stopped the infusion altogether because he said that if I have Polygam it will be a catastrophe that will land me in ICU on a ventilator if they can save my life.
My only alternative and the only two registered medications in South Africa are Polygam and Octagam.   I have not had Octagam for three months and feel so ill that I can only describe it as suffering.  No one would allow an animal to suffer like this. Every day is a borrowed day.  My response to Octapharma SA was that there are only two registered treatments, Polygam and Octagam, and Octagam is out of stock.  He has no idea when they will have stock but did say sorry and that he has no advice for me.  I have tried every hospital, pharmaceutical house and pharmacy in the country.  There is no Octagam.
In the USA they have many alternatives to use.  In South Africa they only have two.  But to get it from the USA to here with all the red tape and then to have to pay for it (I need 35g per month Octagam at R30K per month) is overwhelming in its complexity.  I am also too ill to travel to another country that may have Octagam in stock.   
Somewhere someone has to help me to get the medication and buy me my life.  Our Bill of Rights says that we have the Right to Life.  The South African Government and Discovery are denying me my right to LIVE.

Can the Minister of the Department of Health or the President, the Public Protector or the Medical Control Council please make sure that I can LIVE?  Can anyone buy me my life?