Would it be reasonable for someone with a rare disease that has no good treatments or cure to want to commit suicide?

[blondfrog]

The FDA controls everything and it takes forever for them to apporve a new drug or a drug already approved, but only approved for another disease. Pharmacudical companies want nothing more than money they allow really bad drugs for certain disease, but not other drugs that through even small clinical trials have been proven to be more promising.

[SonicRiver]

When I was 25 I came down with a really bad case of psoriasis for the first time. I was covered from head to toe, even on my hands. I looked like a leper, no one would even shake my hand and my desk chair was covered in flakes from constant itching. I also had arthritis with it that made it hard to climb stairs or sleep. My derm told me to wear gloves (in August as a solution).

I was given the best drug on the market which kills your immune system, may cause cancer and was $4k a shot every week. It did little to help. I certainly felt at the time that my life was over, no one would ever want me and had thoughts like that.

Finally after 6 months of little change the FDA approved a new drug and after getting my insurance to approve it 6 weeks later I was completely free of it with clear skin. 4 years and counting it hasn't come back but is dormant.

I understand the pain of going through something like that but you have to believe even if it is something you have to live with forever that medicines will come along to lessen your symptoms and improve your quality of life. There are support groups out there for people dealing with similar things, maybe not your exact disease, but it would be helpful. It does amazing things to have other people to talk to and learn from their experiences as well as just vent your frustration.

[blondfrog]

Yeah but that could take decades I have had alopecia aereta also a skin condition and its so visible there are still no effective treatments for my condition and I actually recently got diagnosed with alopecia totalis it only effects 0.1% to 0.2% in humans and I got it. The support groups are very far away from where I live and nobody else I know has this condition so I feel like a lonewolf and I feel like shit. en.wikipedia.org/wiki/Alopecia_areata#Epidemiology

[mei0313]

If i had a rare disease, i would want to live. Because I would still want to know what would happen in the future. There could be a cure one day and you might meet someone you love.

And i used to work with regulatory agencies in almost all countries and FDA is the one that has strict policies and care about ethics and moral. If the drug has not been approved there is definitely a reason why it has not been approved.

[blondfrog]

Is that why they make so much money off selling treatment products that have so many bad side effects?

[mei0313]

There are minimum number of patients that they need to include clinical trials.. which mean they need to include number of patients that can show the drug gives statistically signicant effect and has no serious adverse effects.
But since patients in the trials don't represent the whole population in the world, safety issues like bad side effects usually show after the approval. The pharmaceutical companies are required to collect all safety issue after the approval and report FDA annully. So if the drug has many side effects, the company often need to recall the drug or conduct another study to show the safety of the drug.

[blondfrog]

Okay that makes sense so is there a certain number of positive results that they need for them to approve the drug?

[mei0313]

It varies depending on the nature of the drug. They have to analyze the results and data and the result needs to be statistically significant. In clinical trials, usually they have a comparator drug (which has already been approved and commonly used for the indication), and they need to show their drug is superior than the comparator drug in the clinical trial (s). So, there isn't a certain number of positive results they need to show. They need to show the drug is better than existing drugs.

So if you read journals on clinical trials it usually has conclusions like "the statistically significant differences between treatment groups was found. Or... The statistically significant decrease in a risk of (side effects) in the treatment group A..."

[blondfrog]

Oh wow thank you one last question so this drug has already been approved for bone marrow diseases called Ruxolitinib and another drug xeljanz for rheumatoid and they are putting these two drugs in clinical trials for a disease called alopecia aereta and this drug is already approved for another disease like you mentioned. And it says this clinical trial is in phase 2 how many phases are there before the trial is complete? And how long does each phase usually take? This is the site I will feed you through
https://clinicaltrials.gov/ct2/show/NCT01950780

[mei0313]

Hmm unfortunately i cannot answer your questions since it really varies depending on drugs. The number of trials and the duration of trial depend on the nature or drug and the nature of disease.

The link you gave me says the trial is expected to be completed in Aug 2015.
However, there are steps that the company need to take before reporting the FDA about their trial completion.
They need to screen the data to make sure the data has been recorded properly.
And then they analyze data with statistics software to see whether the results are statistically significant or how many patients show good result or have side effects etc.
Then they prepare the reports based on the analyses. They have to submit the reports to FDA.

Based on the link it says it is phase II study, normally phase III and phase IV or post marketing research are required to get approved by regulatory agency.

[mei0313]

But as you mentioned if the drug has already been approved for other diseases and they have enough data that they can show the drug's safety from clinical trials on those other diseases... also if the disease they are studying is found to be caused by the same physio-(chemical) abnormality of those other diseases, they might not have to conduct further clinical trials.

The period of trials depends on the treatment period and how common the disease is. If a treatment period is short and if there are many patients that they can recruit (if the disease is common), the trial only takes about a month or two. But if a treatment period is long and if it is really hard to find patients (it could be because the disease is rare or there aren't many patient who meet the inclusion criteria of the study...), it could take more than few years.

But Novatis (ruxolitinib owner) is one of the biggest pharmaceutical company in the world, so i think they will get an approval faster than other companies.

[mei0313]

Since they can conduct several clinical trials at the same time and gather and analyze the data in a shorter period of time.

[blondfrog]

Wow thanks for all that :) so there is hope for finding a treatment or cure for my disease then? They started trials in 2013 hopefully it will get approved and show positive results. So how long does all the reporting and data analyzing that stuff take?

[mei0313]

Of course there is hope :)
The data analysis depends on the company. If they have a long review system, it might take a longer than a month to review the data and write the report. So it probably takes at least three months.

[princessmethteeth]

I would think it would be more interesting to become obsessed with ones disease become a biologist or biochemist and make a serious effort to study it. It's not like you can't read published literature or pattens and sympathize or gain access to anything you think might work... You just can't sell it.

[princessmethteeth]

*patents

[princessmethteeth]

*synthesize

[blondfrog]

Yeah that's happened before jonas polk had polio and he came up with the cure

[princessmethteeth]

Shit someone I know had a form of cancer and treated himself and hasn't seen a relapse in over 5 years. Given he's a pretty smart immunologist that focuses primarily on cancer research and knows the current literature in and out. He saw results on something that he believed to work for his type of cancer, all the doctors he visited refused to treat him the way he wanted to be treated and thought he was stupid and crazy for suggesting it. He went through back channels and has had a full recovery. Doctors rarely know how to treat a particular disease the best way. The treat the safest least risky way to their practice based on basically computer recommendations that have been vetted and approved through decade long processes... They'll be treating average Joes with what he used in 10 to 15 years... In the mean time they'll have to far more dangerous procedures or die.

[blondfrog]

Wow yeah there are lots of different tests that are being done for cancer of treatment options one of them my bio teacher told be was with something about using animals parts, or organs. That's good to hear though about your friend I wish him luck and on his endeavors.

[Alexious]

I think the person who has the disease/illness should be allowed to have their life humanely ended at their choice. If I was paralyzed and kept alive on a machine I would want to end my life.
If you're that un-happy you should be allowed the choice in my opinion.

[blondfrog]

Yeah exactly who are other people to tell you how to act when they aren't in your situation? That's what pisses me off if I had terminal cancer I would want to end my life or some rare disease that causes severe pain.

[Alexious]

There you go; everyone should be allowed the choice.
Someone in England ended up like Steven Hawking, all of his muscles stopped working.
He managed to tell his family he wanted to die, so they went through loads of bullshit to get him what he wanted. Fuck being left paralyzed on a machine. I'd kill myself.

[blondfrog]

Yeah same here

[Alexious]

Thanks for MHO bro :')

[Justacatlady]

Depends on how debilitating the disease is? If it causes discomfort but doesn't restrict life then suicide seems like a cop out. My SO has a cousin that went to Mexico to get cancer treatment done. He couldn't afford it here and didn't have insurance. He spent 2 weeks in Mexico and the gave him some shots of I don't know what. He has been in remission ever since. So there are options, maybe not exactly perfect ones but until the disease took away the ability to enjoy even parts of life I think suicide is just an easy way out.

[BelleGirl21]

It's reasonable for them to be depressed and think about it. However, I hope they wouldn't. None of us knows how long our lives will be or just how much we are needed. Every person is valuable.

[blondfrog]

Everyone?

[BelleGirl21]

Everyone up until they become murderes or terrorists or child molestors.

[blondfrog]

The government here has committed terrorism so should we kill all the politicians here who have done these things?

[BelleGirl21]

Well if they want to commit suicide I won't stop them...

[blondfrog]

Lol I wouldn't either

[Anonymous]

I have a very rare disease that has no cure and also so does my seven year old child can they give us med yes does it slow it down no does it curw it no does it make us more comfortable yes do I want to kill myself no would I want my child to kill herself no they can't even tell us what gene was mutation to cause this to happen what is the matter with u to say such a thing

[blondfrog]

What disease do you have?

[Opinion Owner]

It a rare form of muscular dystrophy also have several other diseases one other being epilepsy which has no cure either buy the way

[blondfrog]

oh man sorry to hear that :( you deserve to hate life though.

[Opinion Owner]

I don't look at it that way I look at I'm luck that God has blessed me enough that I'm here for now and I don't ever know how long I have and I know that sadly there is someone out there who has it worse than me so I'm going to live life the best I can while I can

[blondfrog]

But if you were really lucky you wouldn't be in so much pain and so disabled. What your going through is not luck I have 3 auto-immune disease and I hate my life and no one understands what I am going through because you can't physically see my disease besides my alopecia aereta

[tattooedhandfet]

Suicide is never the answer. Such a permanent solution.

[blondfrog]

Death gives on relief though and ends pain

[tattooedhandfet]

It can always end pain. The pain is what we want to end. So that we may never hurt again but everyone else around us will have to live to see it. And have to live with the pain of us being gone. It's a very selfish act.

[blondfrog]

Would if you don't have anyone who loves you then is it okay?

[tattooedhandfet]

No I don't think it is. Because most often when people contemplate this act they feel hopeless. Hence may feel like no one loves them. But that can be a distortion within their own mind.

[Anonymous]

I have a incurable disease. I live a normal life with it. It's manageable. It won't kill me. I have no choice but to go on... my disease doesn't define my worth or life.

[evenlift]

If it is a debilitating disease, then yes.

[Balcazaurus]

I suppose that's called Merciful Death.