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TOPIC: Article - Do doctors understand what helps HCV patients....

Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19321

  • rohcvfighter
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An easy to read article not related to the HCV generic drugs, but interesting as it approaches the communication between patients and doctors/nurses so that patients stay on treatment:
atlasofscience.org/do-doctors-understand...ete-their-treatment/

The article originates from Australia :).

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19323

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Dear Drs (not including Dr Freeman / Debasis)

Please read ! Especially NHS consultants.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19324

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My GP didn't tell me anything about HCV because he didn't know and didn't care to find out, so I took myself to the liver clinic at RPA.

Now he is bleating because the doctor at RPA hasn't sent him a report.

Maybe she is too busy helping people clear the disease.

I won't let him treat me like an idiot. It doesn't take long to explain stuff to people, and I'm paying for my 15 minutes. If I have questions I make a list beforehand
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19328

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Found this link when looking at this:

U.S. Study Looks at Long-Term Durability of Hepatitis C Cure, Risk of Relapse and Liver Cancer

By Sean R. Hosein
From Canadian AIDS Treatment Information Exchange

May/June 2016
table for audio link /table for audio link
Researchers in several countries -- including France, New Zealand, the U.K. and the U.S. -- reviewed the records of several thousand people who had been cured of HCV using direct-acting antivirals (DAAs) and found very high rates of cure that were sustained up to three years after cessation of therapy. That is, once cured, the vast majority of participants stayed cured. Rates of relapse, reinfection and liver cancer were very low after cure was achieved.

www.thebodypro.com/content/77767/us-stud...atiti.html?ic=sanext

yours


J
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19330

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In my case, I was lucky to have support and obtain answers from my local doctor, however the main issues were related to the fact that the medical staff was very busy, the available treatment was inefficient therefore there were/are many patients worries to be managed by the medical staff and last but not least a very conservative medical system that does not have the ability to test or try new approaches. This keeps doctors away from information like Redemption trials.There are a lot of doctors who are ready to blame other doctors colleagues if they try a different approach.... under the false umbrella of patient safety.... It is like in arts: very hard to create a masterpiece of work, but very easy to criticise the work of someone else.
And yes, in case of dr. Freeman, apart from his medical knowledge&experience it is to admire his "out of the box" and "out from the comfort zone" way of thinking and acting. A big thanks you for this.

Regards,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
Last Edit: 5 years 3 months ago by rohcvfighter.
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19333

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i guess it's easy sometimes to blame the doctors when we as patients seem to know more than them about our illness and treatment. I felt the same as I was encountering doctors in Thailand that did not have a clue about the new DAA's. Now in the US and conversing with my daughter who is doing her internship. She was grateful for all the info I had given her about the generics and Doc Freeman's work. In turn she said she has passed that info to some of her attending docs that she works under. At present she is working 80-90 hours a week so I do have some compassion if they do not have all the answers. It's WIP as the word spreads. Just my totally unbiased thoughts. :blush: :oops: :)
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19334

  • rohcvfighter
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Hi Cheese

I agree on this :). In an ideal world, treating a patient is in fact a team work patient <-> doctor, where we as patients "know" more than the doctor in terms of what and how we feel, while the doctors knows more than us about the treatment options. In real world however, there are 2 more things to take into account:
- the patient learns something from the doctor and the doctor learns also something from the patient. I see here important that both, the doctor and the patient are open to such learning and do not reject the learning. Sometines it happens that a certain information reaches the patient first. Being open to learn, no matter if one is doctor or not, is an important skill that is to admire and foster and which creates room for new approaches. And informing your doctor and obtaining his/her support for "unofficial" generic medication from India is a new approach (even if in other parts of the world is a known approach)
- teamwork does not always happen .... and this is why most dramas happen. And also here is where one start to hear more about clichees like "acting in patients interest", "safety first", etc, as means to justify the lack of action and the preference to stick to the knitting.
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19335

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Well said RF

Totally agree.
GT 1a
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Meds Cipla SOF/LED
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19375

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Patient education is very important. If you explain to patients how important it is that they take their pills and what could happen if they don't plus give them ideas as to what they can do to prevent missing doses, they do quite well.

Also having a specific person be in charge of returning phone calls and making it a rule that all phone calls will be returned the same day really helps, and having someone that actually enjoys working with hep c patients can make a big difference. Patients will feel like they can talk to them.

Last but not least, having a support group moderated by someone familiar with treatment also helps because patients can ask questions.

P.
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19376

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beaches wrote:
My GP didn't tell me anything about HCV because he didn't know and didn't care to find out, so I took myself to the liver clinic at RPA.
I once had a patient tell me that his doctor told him hep c was like a mouse that was eating cheese.
Last Edit: 5 years 2 months ago by Price.
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19377

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Price wrote:
I once had a patient tell me that his doctor told him hep c was like a mouse that was eating cheese.

I liken it to the pacman creature.


Also,very over medical professionals who treat me as though I'm stupid and couldn't possibly understand what they are saying and it's not worth their time to even acknowledge my questions. Other people than doctors need tertiary qualifications to do their jobs
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19379

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All good except that we are talking about 85% of Doctors who have always placed themselves at the top of the Totem Pole of Life.
The 85% relates to Police Politicians Judges etc which unfortunately for us is rising as the majority cannot be told anything and even when shown they are wrong continually deny. As for the corruption $$ side it is unfortunately likewise and it will never be anything but rising each year.
We are blessed to have Doc Freeman and the other Knowledgeable people on this forum as they are advising Listening and most importantly sharing their Newly discovered KNOWLEDGE for our benefits.
I have met quite a lot of Specialists and had 3 different Professors work on my case at different times but the 40 minutes I spent with the Live Liver Surgeon in India was the most helpful and Genuine.
I live by a few mottos such as we are all here to eat shit and die etc and Respect is Earned and if I am treated with Respect I will Respect them no matter what Position on the totem pole of Life.
First diagnosed Nov 2012 with Hep C 1a End Liver disease
Failed peg and Sof/dac
Given 18 mths to live Aug 2014
Failed sof/dac July 2015
Sep 2015 given till March 2016 to live as nothing they can do
Sourced a supply of sof/dac from India told I was a fool by staff at SCGH
Been in a coma twice 2016 6 stays in Hospital
Last 4 weeks have been unreal back into life again
Hope No One else is treated like Shit by Med Specialists as the Nurse are UNREAL The Good Doc Freeman is genuine Barry Ashton

Barry Ashton
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19386

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A key element is converting the doctors to believe in these new medication. That's what happened also with our dr. Freeman(see his statement "I've been converted by these new medication" in the video available on the homepage of Fixhepc.com).
A "converted" doctor has the power to treat hundreds / thousands of patients, while hundred of patients can convert at least one doctor. And so the wheel is spinning....
I would look at the 85% percent doctors mentioned by Woobia and try to identify how many "Freemans" are among them, open to be converted :)

In the end, it is not a matter of who is right or wrong, rather a matter of knowledge and information share.

What we as patients (or former patients) can do is to facilitate this information share.

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Article - Do doctors understand what helps HCV patients.... 5 years 3 months ago #19387

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There are no shortage of a-holes in any profession, everyone has one.

There is a little saying that goes something like if you lived in my shoes.

I see my lovely daughter working 80-90 hours a week in the hospital doing her internship. I know her goal is not to become a smug know it all a-hole.

Let's not throw the whole lot to the wolves. JMUO
GT 1a
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F0-1
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Meds Cipla SOF/LED
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