access to services- what has been your experience?

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New Member

Date Joined Apr 2008
Total Posts : 2
   Posted 4/6/2008 12:39 PM (GMT -7)   
Hi all,

Although I have been diagnosed with CD for the last 6 years this is the first time I have reached out to a message board, so please bear with me. I have reviewed the forum rules, believe that this an allowable topic. My apologies if it is not.

I am currently writing a research paper for a college class on Organizational Health Policy, and need to discuss several issues surrounding how individuals with Crohns access services. I recognize that I have been exceptionally lucky with my own care in that I have not struggled gaining access to innovative treatment options and am very thankful for that, but also realize that it is probably not the norm. In my research I have not been able to find any information specifically pertaining to the delivery and coordination of health services to Crohns patients.

I would really appreciate it if anyone is willing to share some of their experiences seeking care. Any information you are willing to share is much appreciated!! Some specific topics of interest include: Has negotiating with health insurance been a battle? Has insurance influenced the direction of your care, or other health decisions regarding your disease? Do you feel that you do not have access to the same treatment options as others with CD? Can you access more services than you feel that others can? Has your geographic location impacted your access to care or services? Do you travel to see your doctor?

Thank you!

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 4/6/2008 1:34 PM (GMT -7)   
I think you need to get permission from the site administrator, Peter before you can post this. It usually isn't a problem. Just ask him.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 4/6/2008 1:41 PM (GMT -7)   
I am going to try to answer from my perspective but actually would feel more comfortable if this were private communication some of my answer is not very politically correct.

I actually feel that I have received better than average care starting when I was a young newly diagnosed patient on medicaid. Part of that was probably geography. I was in a very rural part of upstate New York where the unemployment rate was over 50%. Part of that was demographics. I was a young female graduate student from what was concidered a good family-government employees.
The only time I had a doctor be disrespectful or dismissive of me I was at the teaching hospital in that region. That doctor was removed from my case before I even had a chance to complain and the head of the department assigned himself as my attending.
On medicaid you are originally allocated a limited number of medical visits/tests/presciptions per year. I used mine up in about a month but had no problem at all being approved for extra-I was never denied a med or a test due to insurance.
I now live in the DC area and have a good HMO. Again I get adequate treatment. My PCP is mediocre-its hard to get a good one in this region. My specialists are the absolute best. One of them I hand picked back when she did not take my insurance they contacted her and she now takes my insurance.
I have one allergy med that is not the one I preferr becasue it is the prefered drug of my insurance company and one generic that my doctor wants to change to Brand Medically Neccessary that I keep putting off the change because the insurance coverage for brand name drugs when generics are available sucks.
I know that during the time period when I was first ill and living in New York other people in similar circumstance with out the family full of government employees-or who were at or close to retirement age did not get equal treatment-it used to infuriate me though I was greatful for the treatment I received.

Regular Member

Date Joined Jan 2008
Total Posts : 491
   Posted 4/6/2008 2:01 PM (GMT -7)   
I have huge insurance hurdles to cross. I do NOT have insurance. This of course, changes the level of care I receive. The doctors, although meaning well, don't want to put more financial strain on me than I already have, so I do not always get the tests & treatment that I would if I had insurance.

I work 2 part time jobs & freelance at home, so I work as much as I can. I have to, but anyway... Because my husband & I both work, we have a large spend down we have to meet EACH month before I can be covered under Medicaid. The spend down is $1700. Because I had surgery on the first, this is the first month I met my spend down in time to maybe be able to have some testing or a doctor's appointment or something covered. I am going in on the 30th for another colonoscopy & it will be nice not to have to pay for this one....

It sure has been a battle for me. My GI shook her head when she heard that I had such a high spend down. She said this is a very expensive disease (I am very newly diagnosed with IBD) & that the medications are very expensive. So she just put me on prednisone & I am to keep taking my azulfidine as well since the other medications I would not be able to afford. Luckily, I think my IBD is new & mild/moderate, not severe, so far so I hopefully can maintain without the expensive drugs.

It scares me a bit wondering about being able to get healthcare in the future, though. I hope I will not have to struggle with medical bills.

I just had my vehicle repossessed because I cannot afford it anymore due to my bills. : (

I hope things get better, not just my health, but also financially. Only time will tell.
Live for today, for tomorrow you might just get hit by a semi.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 4/6/2008 3:46 PM (GMT -7)   
Folks, how about we don't respond to this thread until we know it has Peter's approval?

I don't think there will be a problem getting approval, but rules is rules.

Co-Moderator Crohn's Forum.

New Member

Date Joined Apr 2008
Total Posts : 2
   Posted 4/7/2008 8:22 AM (GMT -7)   
Thank you for your initial responses and I am sorry that I did not ask for Peter's approval initially. I have just e-mailed him.
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