Every September, the IC community rallies together during IC Awareness Month to educate, to empower and to support the many patients who have suffered in silence at home alone. Yet, in 2020, it almost seems unimportant compared with the lives lost to COVID, the state of our country, a new attack Social Security and the Black Lives Matter movement. Surely, surely, there is time to discuss pelvic pain but this year we have to broaden our horizons and speak our collective truth. Our future depends on it.

Assault on Social Security Disability & Retirement Benefits

With thousands of IC patients disabled and relying on social security disability payments, we cannot be silent when they are under attack. Social security retirement and disability benefits are not entitlement programs. They are insurance programs that we have paid in to through our paychecks to support us during times of disability and as we age. In an astonishing move, President Trump suggested eliminating the payroll taxes that support Social Security payments. On August 24, the Social Security Chief Actuary wrote that if this were to happen, the Social Security Disability Insurance Trust Fund would be “permanently depleted by the middle of calendar year 2021.”   Perhaps even more frightening, the Chief Actuary also stated that the retirement benefit trust fund “would be depleted in the middle of 2023.” Yes, this means that your disability benefits could end next year and that your retirement benefits two years later. We must not let this happen. We MUST fight this. Your voice matters. Your vote matters! Please protest these potential changes.

Source: https://www.ssa.gov/oact/solvency/VanHollenSandersWydenSchumer_20200824.pdf

Black Lives Matter

I can testify, first hand, to the disrespect that IC and chronic pelvic pain patients have received from disrespectful doctors and unforgiving employers who deny leave for medical treatment and care. But have you ever considered what the life of a black IC patient is like and the barriers that they face? We are in this together, right? Yet, historically, the black community has had little voice in the IC movement. I don’t know of a single black IC support group leader. When was the last time you read the patient story of a black IC patient? It’s time for that to change. We pledge that we will help any black IC patients receive care, speak their truth and become IC advocates. Their lives matter.  As Benjamin Lupo said “#BlackLivesMatter does not mean that the value of the life of someone who is white is less than that of someone who is black. It means the life of a black man or woman has as much value and should be treated as such.” 

Pre-Existing Condition Coverage

Did you know that the US Supreme Court will hear oral arguments in California v. Texas, a lawsuit brought by the Trump administration to dismantle the Affordable Care Act? If successful, this lawsuit would not only end health care coverage for 23 million Americans, it would also end protections for the 135 million people with pre-existing conditions.  IC classifies as a pre-existing condition. If this is lost, health insurance companies would be allowed to charge us more for health insurance. Your voice matters. Please use it and demand that we protect Pre-Existing condition coverage.

Wearing a Mask is an Act of Love

Last year, none of us could have imagined 180,000 Americans dead, millions without work and unable to pay rent or make their house payments due to a pandemic. Yesterday, we learned about the first American who was re-infected again with COVID. So, the thought that if you’ve had it once you are protected may not be true because we simply do not know how long immunity lasts. The other harsh reality of COVID is that many are silent carriers. They have no clue that they are bringing this disease into the homes of their family members and friends. This is why your mask matters. What could be a more loving gesture than to protect your family, friends and community from this devastating disease.

Please Plan Your Vote & Vote EARLY! 

It is not our place to tell you who you should vote for. What we are doing, though, is telling you that your vote matters. There’s no clearer example of voter suppression than the long lines seen at polling places across the country. When you have IC, of course, you can’t stand in line for two hours, much less longer. We need restroom access. What’s the solution? Vote by mail and vote early. Then, hand deliver your ballot to your county office. This way, you can assure that your vote will be counted.  If you aren’t sure if you are registered, have moved or would like to register for the first time, please visit: www.vote.org
















“Should any political party attempt to abolish Social Security, unemployment insurance and eliminate labor lawsand farm programs, you would not hear of that party again in our political history. There is a tiny splinter group, of course, that believes that you can do these things. Among them are a few Texas oil millionaires and an occasional politician or businessman from other areas. Their number is negligible and they are stupid.” – President Dwight D Eisenhower







#1 – https://www.ssa.gov/oact/solvency/VanHollenSandersWydenSchumer_20200824.pdfKickin