Are you concerned that you will lose your health care services?

Regardless of our often diverse political affiliations, there is one topic that unites us all – the state of health care in the USA. From rising costs to reduced access, IC patients are at the front line of an increasingly unsympathetic medical system. Consider recent calls to the ICN office.

  • Anne* survives on a small pension. After the first of the year (2017), she was told that Elmiron would no longer be covered by her health insurance and that she would be required to pay $700 a month in out of pocket expenses. It had cost her just $40 before. (Another patient was quoted $2500 for that same medication).
  • After his doctor retired, Lee* was unable to find a physician who would renew his pain medication despite years of moderate, successful use.
  • Sheila* has struggled with severe recurring Hunner’s lesions. She lost her health insurance and, after her savings ran out, was placed on Medicaid. Unfortunately, only two urologists within 200 miles of her home would accept Medicaid and neither worked with IC/BPS. She was denied any of the three AUA suggested treatments for lesions (cauterization, laser therapy or steroid injection).
  • When Mary* selected her health insurance, she chose a very low premium with a high deductible. Unfortunately, when she finally needed to use her insurance, she didn’t have the funds to meet the deductible.

With healthcare reform now under intense scrutiny, it is essential that the more than 10 million IC/BPS patients speak out. We must tell our elected representatives at both the state and national levels what our concerns and needs are. Remember, they survive on very cushy health benefits, salaries and lifetime benefits. Many are completely disconnected from the reality of trying to pay $100 a month, much less an extra $1000 a month, for unexpected tests, medications and/or procedures.

#1 – The Issues

Make a list of the issues that YOU are concerned with. Politics aside, what do you worry about the most. Here’s what we’re concerned about:

Elimination of Medicaid

Of all of TrumpCare’s proposals, the elimination of medicaid is the most disturbing and frightening.  Patients who lose their employer sponsored health insurance and whose incomes suddenly drop often receive health services through Medicaid. Seniors and the disabled are able to stay in rehabilitation centers and convalescent hospitals because of Medicaid coverage. Medicaid is by no means a cadillac health plan. It provides minimal services from a small community of doctors who will accept lower reimbursement rates. Yet, it still saves the lives of countless disabled, elderly and low income families, including many with IC. Stopping this program will condemn thousands of people to suffer in their homes and/or on the streets without any health care services. We hope that you will join us in fighting any suggestion that Medicaid be discontinued.

Pre-existing condition coverage

As a patient diagnosed with interstitial cystitis, will you be excluded from receiving health insurance because of your medical history? Prior to the Affordable Healthcare Act, many health insurance companies refused coverage for pre-existing conditions. Some patients had to wait 2 years or longer to receive coverage. Any future national plan should provide care for pre-existing conditions.

Rising cost of prescriptions

As pharmaceutical companies continue to generate outrageous profits by increasing the cost of even generic medications, many patients have had no choice but to abandon treatment. Pharmaceutical companies should be required to negotiate fair and affordable prices with the Medicare and the US Government.

Out of pocket costs

Patients shouldn’t have to choose between paying for food and paying for health care. “Out of pocket” expenses are fees that you pay for your medical care that aren’t reimbursed by insurance, including: deductibles, coinsurance, and copayments for covered services plus all costs for services that aren’t covered. Will the new national healthcare plan allow uncontrolled out of pocket expenses?

Compassionate pain care policies

Thanks to the opiate crisis, more and more patients are being denied pain medication even though they have never abused medication. Even cancer patients are finding it harder to find physicians who will write a prescription for an opiate medication. There has to be a better way to support pain patients who need real pain care.

Affordable monthly premiums

Whether you are covered by an employer plan, private insurance or the ACA act, there is no denying that premiums have risen dramatically for some patients. Tell your congressman how much you’re paying and the strain it places on your budget and your home. Ask if he or she will require affordable plans. How about 5% of our gross monthly income?

#2 – Show Up

Form letters now rarely work and telephone calls aren’t that much better. Any chance that you have to speak directly with your elected representative should be considered.

Your Congressmen are elected every two years thus their primary concern is getting re-elected. You have to show them that their position on health care will directly determine if you will or won’t vote for them.

What’s the best way to do it? Show up at their next appearance or Town Hall meeting in your district, look them in the eye and tell them what you are concerned about. Call their office and find out when their next town hall or public session is. Tell your friends when the next meeting is and organize a group of people to go with you. Sit throughout the room rather than in a group so that they cannot ignore your group. Do not bring in signs that reveal your position or platform. Wait patiently for the opportunity to ask a question. Don’t be shy.

#3 – Let Your Voice Be Heard

Prepare a list of questions and hand them out to your friends, such as:

“My prescription for Elmiron, the only FDA approved oral medication for IC, now costs (fill in your amount) a month. I can’t pay for this anymore. My annual monthly budget for prescriptions is just (insert your budget limit). Will you commit to requiring pharmaceutical companies to negotiate affordable pricing?”

“I and many district families in (insert your town) rely on Medicare. I don’t think we should be rationing health care for seniors, and the plan to privatize Medicare will create serious financial hardship for seniors who can’t afford it. You haven’t gone on the record opposing this. Will you commit here and now to vote no on any bill that cuts Medicare coverage?”

“I struggle with the most severe form of interstitial cystitis. I have active Hunner’s lesions covering my bladder and struggle with often agonizing pain that, in research studies, has been compared to cancer level pain. The American Urology Association Guidelines for the Diagnosis and Treatment of IC/BPS clearly state that pain care should be provided yet I cannot find a doctor who is willing to write a prescription. Will you commit to supporting programs that provide pain care services to patients in need?”

“Prior to the Affordable Care Act, many insurance companies placed lifetime limits on health care coverage. This means that after a certain, arbitrary dollar figure is reached, my health care benefits could be denied. Will you com- mit to the removal of any lifetime limits on health care coverage. Will you promise to fight for us?”

If you can’t attend a town hall meeting, contact the local office of your representative and ask to speak with their health care representative. Talk with them about your concerns and ask what position that represen- tative is taking on health care reform.

Better yet, go down to their offices and ask direct questions. Be very very clear that their answers will influence whether they earn your vote during the next round of elec- tions.

#4 – Be Persistent

My 94 year old father has spent the last 25 years attending City Council meetings as a Council Watcher. He’s amazing. He reads everything, studies the agenda and then when the opportunity strikes, speaks out boldly about what he believes in. Sometimes he’s applaud- ed and other times he’s booed… but, most of all, he’s respected because he’s persistent.

When the new national healthcare plan is proposed, read it thoroughly. Don’t rely on social networking or TV to educate yourself about it. Ask your political representatives for a copy of the proposal. Read the actual document. Let them know what you like and don’t like. Tell them how this will impact your daily life. Be as vocal as you can be. Every voice, especially persistent yet respectful voices, earn their respect.

#5 – Use the Power of Social Networking

If a price has increased dramatically, find the pharmaceutical companies Twitter and/or Facebook accounts and ask them publicly why their price has gone up. Tell them exactly what you used to pay and what you are now being asked to pay. Ask why they are increased prices? Explain the hardship this has caused you. Force them to go on the record in a public forum.

#6 – Don’t Give Up

The next time the cost of a medication, especially a medication that you use for your IC increases, please:

  • A. Send the ICN an email  and let us know the name of the medication, the old price and the new, higher price. We’ll collect the info and get the word out!
  • B. Inform your doctor that the price has been raised and ask if there are any more affordable options,
  • C. Contact the pharmaceutical company and ask if there are any patient assistance programs available
  • D. Consider OTC supplements, if available. CystoProtek, Cysto Renew, Desert Harvest Aloe and CystaQ are affordable alternatives.


Given the success or lack thereof of the Affordable Care Act (depending upon your political opinion, of course), it’s crystal clear that our national leaders live in an ivory tower of, ironically, our own making. We must all remember that every politician is accountable to their constituents and should be challenged regularly. They are not special people. They have not earned their position because they’ve been “successful” nor should you assume that they understand what life is like with a chronic illness. In fact, congressmen and senators have very cushy health benefits that they then receive for life. Don’t you think that they should be required to use the same health insurance system that they implement for the rest of us? I do.

Some suggest that both parties have been corrupted by big business and that, my friends, may be our biggest challenge of all. In 2016, the pharmaceutical industry and health products industry paid more than $244 million dollars to employ more than 1300 lobbyists in Washington DC who walked the Capital from room to room and golf course to golf course, promoting the interests of big pharma and the medical device industry.1

The pharmaceutical and health care industry also make millions of dollars in campaign contributions. In 2016, they contributed more than $56 million dollars to various candidates.2 44% of those donations went to Democratic candidates and 56% to Republicans. I’ll leave you to ponder why they have historically supported Republican candidates.


1. Center for Response Politics. Pharmaceuticals and Health Care Products – Industry Profile. Accessed 2/10.17 – nt.php?id=H04&year=a

2. Center for Response Politics. Pharmaceuticals and Health Care Long Term Trends. Accessed 2/10/17 – s.php?cycle=2016&ind=H04

*Names have been changed.