Rare renal


Hundreds of IgA Nephropathy Patients Share Experience with FDA, Professionals, Drug-makers

IgAN is considered a rare disease, but it is estimated that about 60,000 in the U.S. have the illness. There ae no FDA-approved treatments for IgAN. It is treated supportively with corticosteroids (often called “steroids”), immunosuppressive drugs, blood pressure medications called ACE inhibitors and ARBs, salt restriction if the body retains extra fluid, and fish oil supplements. However, there are currently more than two dozen ongoing clinical trials for potential drugs to treat IgAN.

The Orphan Drug Act defines a rare disease as a disease or condition that affects less than 200,000 people in the United States.

https://www.fda.gov/patients/rare-d...Drug Act defines,people in the United States.

Also, these meds are only for IgAN patients with high proteinuria despite treatment with RAASi. Only about half of IgAN patients progress to ESRD.
 


she actually sells in the orphan market. She would know because there are a lot fewer people in her market than iga. She is not an idiot. She is a top performer in a space that is more rare. Get a life.

I’m in rare disease, too, genius. Your friend may be a top performer but is still a moron if she doesn’t believe that IgAN is a rare disease…or she’s an arrogant turd for thinking that her definition matters more than the FDA’s. Is it really that hard to grasp that there are varying degrees of rare disease? The drug won’t even be indicated for all IgAN patients. Do some research before you come on here to debate.
 


I’m in rare disease, too, genius. Your friend may be a top performer but is still a moron if she doesn’t believe that IgAN is a rare disease…or she’s an arrogant turd for thinking that her definition matters more than the FDA’s. Is it really that hard to grasp that there are varying degrees of rare disease? The drug won’t even be indicated for all IgAN patients. Do some research before you come on here to debate.
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Who said this was a debate? This is not a true numbers game. It’s not as rare as many rare diseases. You are just trying to make yourself seem more important and Takeda has rare disease so I’ll take her word over your word any day.

Damn, you don’t even understand the definition of a debate. Your earlier post stated
“Asked a friend with Takeda. She said definitely is not rare. Add that to your votes”

WTF does “not a true numbers game” even mean? The definition of a rare disease is literally a numbers game. Your friend a Takeda doesn’t know dick about IgAN or C3. I’m in nephrology rare disease NOW and, unlike you or your friend, can google the definition of rare disease, the prevalence of IgAN, and the proposed indication. I can promise you that none of it makes me important. It simply means that I’m not a moron like you and your friend.
 


Damn, you don’t even understand the definition of a debate. Your earlier post stated
“Asked a friend with Takeda. She said definitely is not rare. Add that to your votes”

WTF does “not a true numbers game” even mean? The definition of a rare disease is literally a numbers game. Your friend a Takeda doesn’t know dick about IgAN or C3. I’m in nephrology rare disease NOW and, unlike you or your friend, can google the definition of rare disease, the prevalence of IgAN, and the proposed indication. I can promise you that none of it makes me important. It simply means that I’m not a moron like you and your friend.
Not any reason to be nasty. You are one of the few that say rare. Other people say no. I asked her because she is in rare a she would know. She said no and I passed it along and you went crazy. She would probably be taking a step back in the rareness if she was to take the job. Stop being so rude. Respect the opinion of others.
 


WILL PATIENTS BE OKAY WITH TAKING 3 VACCATIONS PRIOR TO TREATMENT (read the phase 2 clinical study)?


Vaccination against Neisseria meningitidis and Streptococcus pneumoniae infection is required prior to the start of study treatment. If the patient has not been previously vaccinated, or if a booster is required, vaccine should be given according to local regulations at least 2 weeks prior to first study drug administration. If study treatment has to start earlier than 2 weeks post vaccination, prophylactic antibiotic treatment should be initiated.
 


Not any reason to be nasty. You are one of the few that say rare. Other people say no. I asked her because she is in rare a she would know. She said no and I passed it along and you went crazy. She would probably be taking a step back in the rareness if she was to take the job. Stop being so rude. Respect the opinion of others.

What part of this do you not get? Your “friends” don’t get to have an option on what’s rare or not. It’s a black & white definition. 100,000 is half of the threshold for rare for God’s sake. Plus, again, the drug will not be indicated for everyone with IgAN.
I’ll stop being “rude” when you stop spewing stupidity. Go take your argument to the FDA. We will see if they respect the opinion of your friends.
 


WILL PATIENTS BE OKAY WITH TAKING 3 VACCATIONS PRIOR TO TREATMENT (read the phase 2 clinical study)?


Vaccination against Neisseria meningitidis and Streptococcus pneumoniae infection is required prior to the start of study treatment. If the patient has not been previously vaccinated, or if a booster is required, vaccine should be given according to local regulations at least 2 weeks prior to first study drug administration. If study treatment has to start earlier than 2 weeks post vaccination, prophylactic antibiotic treatment should be initiated.

Yes, they will be fine with vaccinations. Plus, I only see 2 listed. It’s the same for other complement inhibitors for other disease states, ie Alexion’s multi-billion dollar C5 drugs.
 


WILL PATIENTS BE OKAY WITH TAKING 3 VACCATIONS PRIOR TO TREATMENT (read the phase 2 clinical study)?


Vaccination against Neisseria meningitidis and Streptococcus pneumoniae infection is required prior to the start of study treatment. If the patient has not been previously vaccinated, or if a booster is required, vaccine should be given according to local regulations at least 2 weeks prior to first study drug administration. If study treatment has to start earlier than 2 weeks post vaccination, prophylactic antibiotic treatment should be initiated.

Yes, they will be fine with vaccinations. Plus, I only see 2 listed. It’s the same for other complement inhibitors for other disease states, ie Alexion’s multi-billion dollar C5 drugs.
 


What part of this do you not get? Your “friends” don’t get to have an option on what’s rare or not. It’s a black & white definition. 100,000 is half of the threshold for rare for God’s sake. Plus, again, the drug will not be indicated for everyone with IgAN.
I’ll stop being “rude” when you stop spewing stupidity. Go take your argument to the FDA. We will see if they respect the opinion of your friends.
I hope whatever medical conditions you get are ultra rare without treatment and that your friends push you off a cliff for treatment.
 










Offers are lower than expected. They want people to be able to grow in their position. It’s fine if it’s a step up from where you are, but they aren’t offering rare disease. They want to bring people in between 170-185 at the senior level, so that’s 5+ years in rare disease.
Why even interview rare disease reps if you aren't going to meet the minimum pay requirements?
 


This has become a forum where opinions are not valued. All of us are not that way but several strong minded individuals are. Ultra rare diseases are really awful and I hope no one develops one.
 


Why even interview rare disease reps if you aren't going to meet the minimum pay requirements?

if Novartis was a great company and valued their tenured employees then they would hire some strong internal candidates that wanted to come over to this franchise!! But no. It’s more important to hire an external person who has little or lots of Rare/ Renal experience on their resume! Maybe they stink as an employee? Difficult to work with? Maybe they have terrible relationships?

You should value loyal internal employees who are working toward this in their development plan! If there’s anytime to go with an internal employee for an opportunity for advancement, it’s with the Rare opportunity. You have DSE for almost a year! That’s plenty of time to master the new disease state and develop some relationships! You don’t even have a PDUFA date yet!
Shame on you Novartis. This company doesn’t value career development! What’s the point of staying here if you aren’t going to allow any of your employees a chance at a promotion??? Unless of course, you are leadership. They bounce all around with no experience in the speciality.. just look at the ABLs hired for this franchise. It’s awful.
 


if Novartis was a great company and valued their tenured employees then they would hire some strong internal candidates that wanted to come over to this franchise!! But no. It’s more important to hire an external person who has little or lots of Rare/ Renal experience on their resume! Maybe they stink as an employee? Difficult to work with? Maybe they have terrible relationships?

You should value loyal internal employees who are working toward this in their development plan! If there’s anytime to go with an internal employee for an opportunity for advancement, it’s with the Rare opportunity. You have DSE for almost a year! That’s plenty of time to master the new disease state and develop some relationships! You don’t even have a PDUFA date yet!
Shame on you Novartis. This company doesn’t value career development! What’s the point of staying here if you aren’t going to allow any of your employees a chance at a promotion??? Unless of course, you are leadership. They bounce all around with no experience in the speciality.. just look at the ABLs hired for this franchise. It’s awful.

A year of DSE isn’t going to help you much at all. It’s not about mastering a disease state at all. It’s about relationships and knowing how to manage and sell in rare disease. Getting access without a product to start building the groundwork is not easy, especially without relationships.
It blows my mind that people still talk about loyalty. That doesn’t exist. You are in your job because it benefits you - not to help the company. Pharmacy companies have not had any loyalty to employees for years, either. There is no reward for loyalty on either side.
 



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