Advocacy for Patients with Chronic Illness, Inc.
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July 11, 2012
Advocacy for Patients with Chronic Illness helped my son and I as we were dealing with a serious illness and had such a difficult time understanding the illness - 1st, and secondly understanding what help we were actually entitled to. It can be literally overwhelming to deal with a serious chronic illness, but it shouldn't be a fight on top of it to receive just a little bit of help. Advocacy for Patients supplies a wealth of information to help people like my son and I navigate the health care, insurance and medical community, which is critical when someone is seriously ill. I just don't know what we would have done without the guidance we received from this organization.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2011
July 11, 2012
In fall of 2011 I began I PhD program for which I had a full fellowship. Due to reasons relating to my chronic illness, I took a leave of absence from school. I was wanting to know more about my legal rights if I could press the school to give me a half time fellowship and stipend. Advocacy for Patients with Chronic Illness researched my situation and gave me the scoop - basically there is not legal precedent and the the terms of the fellowship dictate full time status is required. Additionally APCI provided me information relating to health insurance since I lost my benefits when I withdrew from school and got denied from a regular independent plan. Also, in the midst of search for employment for myself I realized I was giving out too much information to potential employers and APCI gave me invaluable information about presenting myself, and not my chronic illness on job applications and interviews. Overall in 2012 this organization has had a substantial impact on my life during some difficult times for myself. It is a blessing to find a such a wealth of information relating to the legal ins and outs of living with chronic illness!
The Great!
I've personally experienced the results of this organization in...
My education and career decisions, health insurance, and hope to get a job a bit easier now.
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How would you describe the help you got from this organization?
A lot
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
How did you find this group?
searching on web
What, if any, change in your life has this group encouraged?
education and career change, more empowered with my health care management.
1 person found this review helpful
July 10, 2012
1 person found this review helpful
This organization not only makes sure I am in the loop when issues pertinent to my illness through social media but every person who has an issue is treated like a person rather than a problem. I have had occasion to call the office and I was treated with respect and kindness. Even though my issue was a simple reference I have watched this organization long enough to say with confidence, lives have been saved that would have otherwise been lost all because of them and their tireless work for justice for people who are so often without a voice or whose voice is otherwise ignored.
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
July 10, 2012
Advocacy for Patients with Chronic Illness helped me to live a normal life. Before receiving their assistance my life had become a shell of what it formerly was. My constant, excruciating head pain had removed me from my job, my social life, my family and even much of my marriage. Each day was a struggle made worse by my health insurance company's denials of the only promising treatment I had available to me. During his search for answers, my husband reached out to Jennifer Jaff, the Executive Director of Advocacy for Patients with Chronic Illness. She and her staff collected records and presented an appeal with me against my insurance company. When it was again denied, they did not stop working for me. The communication between them and my husband ,who worked as my representative, was incredible considering we were several states apart. They continued to push for my case and in the end it went to a third party reviewer who ruled in my favor. I had surgery in December of 2010 to have a nerve stimulator placed in my head and my head pain has been reduced 85-90%. I am able to enjoy my life again in a way I never imagined was possible just a few years ago. Advocacy for Patients with Chronic Illness does important work. I feel very blessed that we found them. I am amazed with how much they are able to do for so many with so few resources. Their efforts to provide free services to chronically ill people nationwide should be both applauded and supported.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2010
July 10, 2012
My husband has a chronic illness. Advocacy for Patients with Chronic Illness has helped us understand his rights as a patient not only with a pre-existing condition but also as a working chronicly ill patient. We are better prepared for the changes that are coming in our situation. We have been given literature on our rights, how to file disability when the time comes, and local, state, and federal resources. We also have Advocacy for Patients to turn to if something goes wrong. Where else could we have gotten all of that? We also have the opportunity to ask questions of talented and knowledgable professionals in the medical law field. All of this has been provided free of charge.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
April 28, 2012
Finding myself sick and wheelchair bound from severe tenosinovitis caused by Lupus plus the chemotherapy etc. was not helping anymore, my insurance comany (BCBS of NE) decided that Benlysta (which had been approved by the FDA) was an investigative treatment and would not be covered. They denied me and then denied the appeal from my rheumatolotist. I was just too sick at this point to fight them myself. Jennifer and Nicole took my case and forced the insurance company to cover the medicine that was necessary. It is a horrible state of affairs in my mind that the insurance company can not be trusted to be responsible, but on the other hand, thank God that there are people and a few intitutions like the Advocacy for Patients with Chronic Illness who can and are willing to be helpful. Rebecca
Ways to make it better...
If I had to make changes to this organization, I would...
Make it larger and more poweful
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
What, if any, change in your life has this group encouraged?
living
November 1, 2011
My son has crohn's disease and migraines. He is in junior high school in the New York City public school system, and it became clear to us that he needed accommodations in school. He was not doing well with his health, and was often absent. We requested a 504 plan, which is a plan to develop accommodations for students through the Americans with Disabilities Act. The school administration told us that they could not accommodate for him, and kept putting barriers to us getting a plan in place. I saw Jennifer Jaff's name as the author of the 504 template we were using, contacted her for help. She responded within 20 minutes to my email with such thoughtful advice. Every step of the way, Jeniffer has helped us deal with the school. She really understands the issues people with chronic illnesses are dealing with. She is intellegent, and a very good lawyer. I like that she helped us deal with the school effectively, while helping us avoid an uncomfortable confrontation with the administration. We absolutely love Jeniffer Jaff and her organization.
The Great!
I've personally experienced the results of this organization in...
Getting accommodations for my son in school.
Ways to make it better...
If I had to make changes to this organization, I would...
The only problem is having a staff that works out of Connecticut, and cannot travel often to work on cases face to face. But the organization does manage to work things out through conference calls and through all the other communication technology. So, though it would be great to have a lawyer in the same room with you, you still get great advocacy long distance.
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
How did you find this group?
I saw the group's name on a 504 template I got from the Crohn's and Colitis Foundation website.
When was your last experience with this nonprofit?
2011
October 4, 2011
This organization headed by Ms. Jennifer Jaff, is an outstanding source of information that is very helpful to all with chronic ilnesses, especially those with IBD. I bought the Know Your Rights Handbook and found it to be very helpful. It is comforting to know that there is a person, a group, really looking out for those with IBD. My son has Crohn's disease and I know that I can count on them to help me when I run into trouble getting help with whatever he might need. I am a member of CCFA and they are awesome, but Ms. Jaff takes it to a more personal level when helping you. Thanks to Ms. Jaff and her staff for being such a great source of help and support. Stay well.
Carmen Fiorelli, Madison, WI
The Great!
I've personally experienced the results of this organization in...
Purchasing the Know Your Rights Book and spoke to Ms. Jaff twice.
Ways to make it better...
If I had to make changes to this organization, I would...
Hire more wonderful people to help!!
October 21, 2010
Jennifer is a skilled and knowledgeable lawyer with a number of victories to show for it. The book she wrote, "Know Your Rights," is incredibly useful as well.
The Great!
I've personally experienced the results of this organization in...
I use the book Jennifer wrote to help me figure out my rights as a graduate student
Ways to make it better...
If I had to make changes to this organization, I would...
make it bigger
October 20, 2010
I donated very little but I've watched and witnessed what an amazing woman Jennifer Jaff is with her organization, fighting for people who can't fight for themselves. Jennifer, herself who has this painful disease, knows what it feels to be discriminated, ignored, etc while battling this disease and not getting support from people they loved because they don't understand the disease that overtakes this person's life. She listens, consults, advices, and supports...more importantly, readily to fight for them. She cares about every person she comes in contact with and treats them like any human being should be treated - unconditional love with no strings attached. She makes the person feel a person, not a disabled person.
The Great!
I've personally experienced the results of this organization in...
I've had personal support and advices from Jennifer and she's always there to listen, even when I needed to vent. She has helped me getting information on medical insurances when husband was laid off. I have also benefited from her sharing information daily she posts on behalf of her organization.
Ways to make it better...
If I had to make changes to this organization, I would...
I would want to see them having sufficient funds to start a committee focused primarily on donations/fundraising so that Jennifer Jaff and her staff can focus on what they love the most - their clients/patients.
More feedback...
Was your donation impactful?
Definitely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
What specific problem, purpose, priority, or project prompted your gift?
They need all the help they can use in order to help people.
Why did you make your donation at this time?
They really need the money to keep their organization in operation and it's still not enough.
What would you tell others about this organization?
I would them that it's an amazing organization that would go very far to fight for them, at little or no cost if they cannot afford. And they would be treated with respect right from the beginning.
When was your last experience with this nonprofit?
2010
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